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Monday, August 19, 2013 4:52 PM EST Disappointed but not discouraged!
On Friday I received a call from Dr. Ain’s PA Trace, she wanted to let us know that Dr. Ain had called her from out of town and after some thought has decided that he wanted Nolan in the brace full 24/7 with the leg brace locked straight. What this means for Nolan??? Nolan won’t be able to sit in the wheelchair or a chair. It will prevent him from starting Middle School at this time. We will be once again on Home and Hospital school. Nolan is of coarse disappointed but he is looking forward to seeing his Home and Hospital teacher from last year, Ms. Edmonds. Hopefully the time will pass quickly and he will be able to join his classmates in the late fall. Not sure I will welcome the next surgery before the end of the year after this.
Nolan has been doing really well, still having pain in the lower spine but it has only been two and a half weeks since surgery. I have weaned most of the pain meds down to 1 or 2 pills a day. Now that he won’t be able to sit in a chair, we have ordered a reclining wheelchair so that Nolan can hang out in the living room and watch TV or play video games.
My hopes for getting connected this fall have fallen by the way side, looks like it will be spring before I can get out and about again to bible study or volunteering at the schools. My plan was to hit the gym every morning after the kids left for school, but I may now have to join the after work crowd! I am trying to stay POSITIVE and not be discouraged. There must be a good reason they do not want Nolan to start school at this time. I am thankful we have a doctor who is always thinking of what is best for Nolan.
Pray for Nolan and I over the next few weeks, I am sure Nolan will struggle when everyone returns to school and he is left behind with me.
On a happier note, Mariah Lord, a friend from Colorado has joined our household!! We are so happy to have her staying with us. She started with a position at All Risks today! Congrats Mariah!!!
Love and Blessings,
Nancy, Sam, Cooper, Mackenzie, Mariah and Nolan
Sunday, August 11, 2013 11:34 AM EST Recovering at Home
The last week and a half has defiantly taken a toll on me, we have had very little sleep until the last few days. Last Sunday was the day we broke out of the hospital, a few days earlier than we expected. Nolan is doing very well, the pain is finally somewhat under control as long as we do round the clock medication. He usually rest a good part of the day. His appetite has not returned to normal and even minecraft has not held his interest long, but seems to be improving. Hopefully over the next few weeks he will get stronger and return to his old self. This weekend he seems to be doing better, we medicated him up and took him to see the new Percy Jackson Movie. He did really well, and then slept most of the afternoon after we got home. He actually slept through the night last night for the first time without extra pain meds. He seems to be on the mend, getting better everyday. Every surgery he seems to bounce back quicker and quicker, this one is a fighter for sure.
The plan is that Nolan will start school on the 26th, maybe not a full day but at least for a half day in the beginning. Middle school, can’t believe he is starting middle school already. Seems like yesterday that he was starting preschool at Lafayette Elementary, with Ms. Kathy clinging to my leg as I dropped him off. It will be good to get back into the school routine.
Special thanks to some great friends Kim Landon, Nancy Boland and Michele Welsh for the great meals you all have provided last week. We really appreciate it so much. It takes one less thing off my list of deciding what to feed the family. You don’t know how much you have helped. Nolan particularly liked the brownies! Sweets always make a hit.
Sam will go back to work this week and bring some normalcy back to our schedules. It was nice having him home to help move Nolan around. Nolan is getting better about helping me move him so we should be ok this week without Dad home during the day.
Some exciting news, a friend of ours from Colorado, Mariah Lord is moving to town and will be staying with us for a while! She recently graduated from A&M and has taken a position at Sam’s company All Risks. I am so happy to have someone familiar coming to stay!!! Yeah Mariah! She will arrive next weekend, can’t wait. Also this will insure visits from one of my best friends from Colorado, Cheryl Lord!!!
We also had some alarming news this week. Grammy and Grandpa were in Dallas this week and while they were there Grammy had a mild heart attack. Thankfully they were near a hospital and she was seen and treated quickly. No damage was found and she is home now resting. Feel better soon Grammy!
So this was a short and sweet update but I wanted you to know things are going well. We will see Dr. Ain again in about 4 weeks. I will try to keep the updates coming as best I can, I am sorry this one was slow in coming.
Love and Blessings,
Nancy, Sam, Cooper, Mackenzie and Nolan
From Home sweet home!
Saturday, August 3, 2013 5:21 PM EST Hospital Life
Sorry for the lack of information faithful Nolan followers, I was so tired from the last few days that all I have wanted to do when I had a moment was sleep. I feel better today after sleeping at home last night. Now for what you came here to hear, how is Nolan?? Nolan is doing very well. We moved to the 10th floor on Thursday morning about 36 hours quicker than we expected. Thursday was spent mostly with Nolan sleeping; our goal for the day was to control pain and rest. Through out the day Nolan was snoring and had laborious breathing. Thursday evening around 11:30 - midnight Nolan was having trouble with his oxygen saturations, dipping in to the low 80’s and even some 70’s, so the oxygen was put back on and we worked to bring them back up into the 90’s, not long after this Nolan’s heart rate was around 150 – 170 with Bp around 130/30, causing alarm with the nurses and doctors, Nolan was placed on all the monitors that we had been taken off of earlier that day. Nolan status was then moved to IMC (immediate medical care), they switched his nurse for the rest of the shift to a seasoned nurse who only had Nolan to care for, she remained in and out of our room the rest of the night, and it became very similar to PICU care. There was much discussion about what was causing this reaction and around 4am with 5 docs and 4 nurses in the room it was decided he was having a cortisol deficiency reaction and they ordered another stress dose of cortef, which seemed to work. On Friday Nolan seemed to have a better day, daddy got him up in his wheelchair for a few hours. They have also decided that a brace will be better for Nolan and will help him keep his back straight and not to twist his body as much when he is moving around, so they came to fit him for a brace very similar to the one he had with his first spine surgery in 09. He is still having a lot of pain, but they are working to control that with oral pain meds as of today, this is in preparation of going home. Nolan was not very happy about switching from IV meds as they took the PCA pump off this morning. The brace arrived today and fits fairly well, it does have a thigh component that will help him not to twist, so it is a hard shell round his trunk and down his right thigh. He has sat in the wheelchair several times today and we even took a little spin around the hall. His usually sweet disposition is a little sour today but understandably so. We hope for an early release tomorrow but were told it might be Monday before we make the break. Nolan is resting now as he waits for a visit from a special friend from church, Ben.
The staff here has been wonderful and of coarse Nolan has all the nurses wrapped around his finger. Some come in just to hang out with him during the night. He has shared his videos, music and games, showing them his favorite things. Nolan has learned to use the nurse call button all on his own. I loved listening to him ask for his nurse to come help him with something this afternoon and how polite he was when speaking with them over the speaker, thanking them when he was finished. What a little gentleman he has become. What more could I ask for?
I will switch with Sam again in the morning unless they decide we will go home! Hopefully the next post will be from home.
Love and Blessings from 10thNorth room 44
Nancy and Nolan
Wednesday, July 31, 2013 9:43 PM EST The quiet hum of PICU
Our super star Nolan sailed through surgery like the pro that he has become. I applaud the Hopkins staff, these guys are awesome. Dr. Greenberg was probably the best anesthesiologist we have ever had, Nolan came out of surgery off the vent and in the best shape we have ever seen him post surgery. The PICU nurse said he was chatting with them soon after his arrival on the floor, telling them to get his mom and skip waiting for the doctor. That’s my boy!! He is still in a lot of pain but that is expected over the next few days. They are pumping him full of pain meds trying to stay ahead. He is in and out of sleep at this point, only waking when the spasms hit. The incision is huge, reaching almost the entire length of his back. He is “Titanium man” our new theme song :
“I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won't fall
I am titanium
You shoot me down but I won't fall
I am titanium”
Dr. Ain spoke about possibly putting him in a brace because his posture is so poor that if he continues to slump it will pull the new screws loose. I would rather do that than have to repeat this surgery again for a 4th time!
It’s quiet in our corner of the PICU only the hum of the oxygen and the pumps, no noisy vent this time, we have the occasional pump alarm. This end of the unit seems to house many of the kids we saw checking in for surgery this morning. The high risk kids that go to PICU after surgery instead of the normal post op recovery, Nolan’s middle name is “high risk”. Our family is used to the hospitals, the waiting, the surgeries, it is a part of our normal life, we don’t stress too much, we laugh and joke with the staff, and it is all so common place for us. Sometimes I think we don’t take it all serious enough, I am not sure what it would take to shock me now but I don’t want to find out. I like to think that our calm, our peace is truly from the Lord and that we show our dependence on Him. I look around at some of the other parents and visibly they are shaken, one mother was hugging the surgeon, another was upset when the doctor came and he wasn’t smiling, she immediately thought something had gone wrong, another mom was tearful after she heard her child was ok. I wonder most times if they know the peace we have, that someone else carries our worry, and that our child (children) rest in His hands. I wondered as we prayed so openly in the waiting area with Kevin, the youth pastor from our church, if they too had the comfort of truly knowing the Savior who cares so deeply for them and their child. I pray they do, for there is only one way to navigate this “high risk” world that our children live and that way is holding on to the one who created it all.
We are so grateful that Nolan did so well, what a blessing. Thank you faithful friends and family that have been tirelessly praying through out the day, it has been great to read all the messages and prayers as we waited. If I did not respond to your message/text/call I apologize, we truly appreciate it; sometimes it is hard to get back to everyone quickly. I am praying for a peaceful night. Tomorrow will be a challenging day as they will have him up and out of bed at some point during the day. We hope to move him out of PICU and onto the 10th floor tomorrow, if they have a bed available. That is it for tonight.
Love and Blessings,
Sam, Nancy and Nolan
Sunday, July 14, 2013 9:37 AM CDT Parting is such sweet sorrow!
As our month long visit home comes to a close (yes Maryland I am returning), my spirit has been lifted and renewed. I feel ready to face Nolan’s next surgery scheduled for July 31st. It was good to be here basking in the sunshine and dry air visiting with family and friends, a much needed break from doctors and recovery for Nolan. I know he is sad to return next week to pre-op appointments that begin the day after we land. He is still very limited on what he is allowed to do (even though we have pushed the limit quite a bit) he is much stronger than he was at the beginning of the summer. He is still wheelchair bound when we are out and about but uses the walker when in the house.
The surgery on July 31st will be the second in the series of 3 that Dr. Ain has planned for this year. This one is a lumbar revision, the spine is compressed again below the area that has been decompressed twice before – so this will make our 4th spinal surgery since 2009. The recovery should be quicker than the cervical spine, I am planning 4-6 weeks, of course Dr. Ain may have a longer recovery plan – also you never know what Nolan has planned, he operates on his own timetable! We are not sure when the 3rd and final surgery for this year is scheduled, we think sometime in late fall, of course this depends on how fast and well Nolan recovers.
I am trying to have a more positive attitude as I head back to Maryland focusing on prayer, fitness and others to keep from slipping back into the dark place I landed over this last year. I missed the comfort and support I had in Colorado of the people who have walked some of our darkest times with us and found it hard to find my way in Maryland. I have new resolve while visiting Colorado this summer, I have laughed, cried, fellowshipped and worshiped with my family and friends filling me with peace. I know someday we will be lead back here to once again share our lives in Colorado. Until then we will continue working to get Nolan better, see some amazing places, get Cooper and Kenzie through high school and into College, help Sam build an amazing thriving business and make some lifelong friendships. I am choosing joy.
It will be very busy upon our return to Maryland late Wednesday, first full day back will start with doctors appointments! The countdown has begun we are T-17 days to surgery. Our summer is almost over, it has been short but oh so sweet.
Thanks to those who still actually read our updates and sign our guestbook, we really appreciate it!
I will be giving more updates starting July 31st – surgery is scheduled to begin @7:30am – I will post quicker to facebook, so if you are not connected to me go ahead a friend me!
Love and Blessings
The Ramsey’s
Tuesday, May 14, 2013 8:59 PM CDT MPS Awareness May 15th
What Are MPS and Related Diseases?
Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.
Syndrome Name Common Name Enzyme Deficiency
MPS I H Hurler a-L-Iduronidase
MPS I S Scheie a-L-Iduronidase
MPS I H-S Hurler-Scheie a-L-Iduronidase
MPS II Hunter Iduronate sulfatase
MPS III A Sanfilippo A Heparan N-sulfatase
MPS III B Sanfilippo B a-N-Acetylglucosaminidase
MPS III C Sanfilippo C Acetyl CoA: a-glycosaminide acetyltransferase
MPS III D Sanfilippo D N-Acetylglucosamine 6-sulfatase
MPS IV A Morquio A Galactose 6-sulfatase
MPS IV B Morquio B B-Galactosidase
MPS VI Maroteaux-Lamy(arylsulfatase B) N-Acetylgalactosamine 4-sulfatase
MPS VII Sly B-Glucuronidase
MPS IX Hyaluronidase
ML II I-Cell N-acetylglucosamine-1-phosphotransferase
ML III Psuedo-Hurler polydystrophy N-acetylglucosamine-1-phosphotransferase
What are the Major Characteristics Of MPS and Related Diseases?
While the symptoms of the diseases may vary from one syndrome to another, there are similarities. Affected individuals may have mental retardation, cloudy corneas, short stature, stiff joints, incontinence, speech and hearing impairment, chronic runny nose, hernia, heart disease, hyperactivity, depression, pain and a dramatically shortened life span.
How Are These Diseases Inherited?
MPS and related diseases are hereditary. In nearly all cases a child receives a recessive gene from each parent. MPS II is the only exception where the gene may be passed from a mother to her male children. A couple’s chance of having another child with one of these diseases is 1 in 4 with each pregnancy. Unaffected siblings may be gene carriers of the disease. The occurrence of MPS and related diseases in the general population is thought to be one in 25,000 births.
Is Prenatal Diagnosis or Carrier Detection Testing Available?
For most MPS conditions, amniocentesis can be performed between 14 and 17 weeks gestation to determine if the unborn child is affected. Alternatively, chorionic villus sampling (CVS) can be performed between eight and ten weeks of pregnancy. Tests also are available to determine whether individuals are carriers of an MPS or related disease. To learn more about these tests contact your doctor, nearest genetic center or the National MPS Society.
Is Research Helping Today’s Families?
Although there is currently no cure for MPS or related diseases, research is making great strides. Carrier detection, the development of replacement enzymes, and the possibility of gene therapy, are among today’s research themes and treatment options. Bone marrow transplantation has been considered successful for many, though relatively few individuals qualify for this high-risk procedure. We’ve made major advancements in research thanks to the fundraising efforts of the Society and its members.
How Can You Help Find the Cure?
Since 1975 the Society has supported individuals and families affected with MPS and related diseases. We are governed by a member-elected volunteer Board of Directors, many of whom are parents of children with MPS and related diseases. We benefit from the expertise of a Scientific Advisory Board, comprised of world-class physicians, researchers and medical professionals throughout the world. We need your support in helping us teach our mission to others and raising the money we need to support medical research – the key to longer, happier lives with MPS.
To support research volunteers raise money to provide student fellowships and fund research projects at a number of prestigious university centers. Contributions may be designated for general or syndrome-specific research. Technical conferences are periodically held allowing researchers to collaborate and discuss their findings. Sponsors are urgently needed to accelerate the encouraging research that is bringing therapies – and ultimately the cures – to children and adults with MPS and related diseases.
To support families the Society works in many ways. We publish a series of resource guides dealing with specific diseases and treatments. Our newsletter, Courage, is distributed by and for the membership and is commonly referred to as a lifeline for families, physicians and professional care providers. Courage contains letters and photos submitted by families, reports on the breakthroughs in research, and information on disease management and improvements in therapies. We hold conferences every year in different parts of the country enabling families to meet and learn more about their disorder. Leadership families have been identified both by region and by syndrome to serve as valuable points of contact for newly diagnosed families. A fund has been designated to assist families to attend our conferences and to obtain medical products that will improve their quality of life. We also provide much needed emotional support to all those affected by the tragedies of MPS and related diseases.
To increase public and professional awareness the Society sponsors public events, issues press releases, publishes syndrome and treatment materials, and maintains a website. The Society’s web site, www.mpssociety.org, is available to anyone seeking information and updates on research, legislative activities, family support and upcoming events. In keeping with our mission, the committee on federal legislation advocates enhanced MPS research in the pursuit of treatments for MPS and related diseases. We work to cultivate working relationships with congressional offices and government agencies for the benefit of MPS families as well as advocating enhancements to federal programs such as SSI, Medicaid and others important to the daily lives of MPS families. The National MPS Society participates in international symposiums, which gather a global contingent of MPS medical and scientific professionals, and networks with a growing number of international sister organizations.
The National MPS Society
PO Box 14686
Durham, NC 27709-4686
Website: www.mpssociety.org
E-mail: info@mpssociety.org
877.MPS.1001: Toll-free
919.806.0101: Telephone
919.806.2055: Fax
The National MPS Society is a tax-exempt non-profit organization under IRS Section 501(c)3, dedicated to individuals affected with MPS and related diseases and to their families.
We appreciate all the donations, thoughts and prayers that have been made for Nolan over the years.
Hope It’s powerful. It’s all we got. Cure MPS & ML
Please wear Purple tomorrow to honor and remember all those effected by MPS.
On a side note, Nolan's next surgery is scheduled for July 31st.
Wednesday, April 24, 2013 3:25 PM EST Freedom!!!
Yesterday Nolan was freed! The halo is now in the trash. Can’t tell you have wonderful it is to be free of that contraption. It was a little overwhelming for Nolan but he did great. He has been a bit tired, I think because he is not used to supporting his head anymore and it will take a few days to adjust to the neck brace. The new brace is to be worn 24/7, he has a hard foam brace we switch him into so he can shower. Someone has to support his head while we switch the braces out. He seems comfortable enough. This brace will remain for at least 6 weeks, than we will see Dr. Ain and hopefully switch to a softer brace for the next month or so. Nolan can wear clothes now, it seems like such a small thing but finding things that would fit over the halo and keep him warm has been a challenge. Thank goodness for Lynn Williams and her creative skills she used to make Nolan a shirt that snapped all around the halo that we would wear when he had to go to the doctor, it was a lifesaver. With the new brace he still has limited movement but it is so much smaller than the halo he almost feels lost without the bars and vest.
We hope to return him to school on Monday. He is really looking forward to seeing all his friends and teachers. He is still really restricted but at least he will get to be in the classroom. He really won’t be able to use his upper body much for a while. No swimming this year, he is disappointed as we just opened the pool over the weekend. It will be nice to have some of our normal routine back. I think I am as excited as Nolan to be able to be out and about again. Although we might be slower getting around!
Spring has sprung here in Maryland. It has been very pleasant weather, even though the bugs are out in full force. (you all know how much that pleases me!) I am trying to enjoy the sunshine and pretty flowers and trees, it is so different from Colorado who has been digging out from spring snow. I miss it all so much, the snow, the mountains and dry air!! We are looking forward to our summer trip to Colorado, it will be a fantastic break before we have the next surgery that is being scheduled for the end of July. The recovery for this surgery looks to be only 4-6 weeks, a piece of cake! We even hope for Nolan to start middle school on time with his classmates. Can’t ask for much more that that!!
The end of year activities are gearing up, choir concerts, ballet shows, AP exams, SATs and college visits. Can’t believe this school year is almost done and that Cooper will start his senior year in the fall, Mackenzie will drive soon or that Nolan will start middle school. Where has the time gone? Where are the days of Cooper running around playing with legos , Kenzie wearing her bikini everyday even in the winter and Nolan only eating orange food. In the blink of an eye they will be gone. I cherish these last few years I have with Coop and Kenzie, while I still have a role in their day to day lives. I love hearing their stories, loving on their friends, and just hanging with the coolest kids I know.
Keep Nolan in your prayers as we start the second phase of recovery, the doctor said that it will take a full year to be fully healed. Also my mom had her heart valve replacement surgery this morning and seems to be doing well, she will be inpatient for about 5-7 days. Keep her and my brother in your prayers as they start the road to recovery!
Wednesday, April 3, 2013 9:47 AM EST The Home Stretch
As April 23rd approaches I can not help but feel a since of excitement. Dr. Ain did not say it was certain that the halo will come off but he said it was possible. So we feel these next three weeks to be the home stretch, it wont be long now. Nolan has been making plans for when the halo comes off(movies he wants to see, restaurants he wants to go to, stores he wants to visit), he is also approaching this with caution as to not be too disappointed if it does not come off. I asked him if he wanted to wait and have his birthday party after the 23rd so that he could be without the halo and he said no we should do it the weekend of his birthday because he might not get it off on the 23rd. I smiled at his mature thought process. So we look forward with delight. Nolan will be in a neck brace for several months after the halo removal and may still be wearing it when we begin the next surgical adventure in July. Lumbar surgery will be scheduled for the later part of July as we plan to be in Colorado from June 19-July 17th, Nolan needs a little bit of fun with his cousins and friends before we are confined once again to the house.
On to planning a birthday party for the 18th for a kid who can only wheel around two rooms in the house, hmm… well it looks like we will be having a Minecraft party! Nolan is inviting several of the boys from his school and neighborhood to come play minecraft with him online, they will all bring their laptops and sit in the living room with Nolan playing in their pretend worlds. Mackenzie has offered to make a Creeper cake and I will get Nolan’s favorite food….Pizza. Sounds like a fun day indeed.
Tomorrow is another major milestone in Nolan’s life. April 4th, 2003 Nolan received his lifesaving cord blood transplant at Duke University Medical Center in Durham, NC. We celebrate this day with the same enthusiasm as his natural birthday. 10 years, it is such a blessing to have mothered this sweet, caring, mischievous, funny, and loving child through all the ups and downs of his difficult path. Surgery after surgery, he just keeps pushing onward, he has a can do let’s beat this thing attitude for everything that comes his way. I have learned so much from him. My heart bubbles over with love. We will miss our traditional celebration with the Strayer clan!
Nolan has made a couple of remarkable friends here in Maryland and I must thank them for all the love and friendship they show Nolan everyday. Landon Drosihn, you are one fantastic friend you come over and sit with Nolan on the laptop for hours on end building on minecraft, I love to sit and listen to the banter, you have made this three month ordeal pass so much more quickly. Neil Hrdlick , you amaze me, you come in like a ball of fire and keep Nolan entertained for hours, just sitting watching TV, Playing the Wii U, it doesn’t matter, you bring Nolan little treats you think would make him smile, I love that you care so much for my son. You boys make Nolan feel special and for that you will always be number one in my book!
Our family has been shown so much love over the last six months, first with my surgery and then immediately following on the heels of that Nolan’s surgery, I have hardly had time to catch my breath. I have tried to thank everyone for all the generous meals, flowers, gifts, visits, cards I am sure I have fallen short and missed so many. We so appreciate all that has been done for us.
We have also had many fun moments over the last few weeks, Sam and I celebrated our 23rd wedding anniversary on March 10th and Sam surprised me with a visit from my sister-in-law Michelle, who I have been missing so much. It was a wonderful weekend visit that I cherish. We just sat in the house with Nolan and talk mostly and watched the whole 1st and 2nd seasons of Downton Abbey. My husband knows me so well and knew my heart needed a visit. The funny part of the story is I thought he had forgotten our anniversary because he kept saying his gift was backordered from Amazon. Hehe The gift I gave was not as exciting, but I think he loved it just the same. (an electric toothbrush)
Next I had a quick visit from one of my most dear friends in the whole world Melissa Ronacher. She was in town on business and flew in a day early to see us. My spirit has been revived. Can’t wait to spend more time in June.
This week Mackenzie had a five day visit from her bestie Olivia Coker, it was so fun having her lively presence in the house. Sam stayed home with Nolan while I took the girls around to see some of the sights in DC and Maryland. Good time for the girls and a nice break for me.
Sam leaves for London on Sunday for a week, then to Richmond the following week and Boston the one after that. Whew I will be glad when he is back! Prayers please, I will be dependant on Cooper for errands and driving Mackenzie to dance for three weeks. Also prayers for my mom, she will be having a procedure on April 11th to see if she can undergo open heart surgery or if they have to do an alternative surgery for valve replacement. The surgery will be soon to follow and I will probably be making a quick trip to Dallas for that if all works out here for me to be gone a day or two.
Thank you for all the prayers for Nolan and our family, we couldn’t do it without it!
Thursday, February 28, 2013 10:45 PM EST Stirring thoughts
It still brings tears to my eyes, when I hear about ignorant people making fun of a special needs child, especially my child. As many times as we have experienced it I still can not believe there are people who do not have compassion for these children. Mackenzie often writes about Nolan and MPS for projects and papers for school. She recently did a project on MPS and used some photographs of Nolan during transplant. Monday some classmates were making crude remarks about her project, her brother, she was fuming when she came home. The teacher did call the students out and talk with them. I don’t understand how someone can be raised to not have compassion or respect in the least for someone different than they. Have we really not moved beyond this, we talk and talk about diversity. He is a little boy longing to be accepted like every other child. It draws me back to a day in 2007 when we were at Chili’s and Nolan was 5, he was just a friendly little thing, he was playing around the table, he saw a nice looking lady and went to say hello, he tugged on her coat and she flung him way, she turned and spoke to David Slone a friend and pastor, stating that “handicap children should not be a drain on society and be kept at home.” I was devastated! I had never heard such out right distain for my child. A sweet, loving child who has never met a stranger or someone he did not like.
Mackenzie also had an experience at a park one day many years ago of kids laughing at Nolan while he played near by. She was awakened to the ignorance of man at that point, she stood up for her brother that day, the first of many moments when she was called to be his advocate. My heart breaks for him as he is now old enough to realize that he is the subject of the remarks and laughter. He is a generous and loving soul who deserves respect that other children receive. We live in such a broken world. I know my child has an impact for good here and that while we have to endure a few ignorant people in this life we also have had the opportunity to meet and experience true community. Nolan’s reach is further than I have ever anticipated and I believe will reach further still. His “story” will spread and move people beyond my wildest dreams. God will make all things beautiful for him.
Sorry for the rant tonight, I am tired. I watch my child struggle on a daily basis without much complaint, he loves his community and the people in it. I am honored to be his mother.
My heart aches tonight for a friend of ours from Katy, Tx , Rosie Barrera please remember her and her family in prayer, she is battling the horrific disease of pancreatic cancer.
Tuesday, February 26, 2013 11:30 AM EST This weekend I had the privilege to attend the Thrive women’s retreat with our church, Grace Fellowship. We went to Gettysburg, PA for the weekend and heard a woman by the name of Lisa Whittle speak about the holes in our lives and how God wants to make them (w)hole and what our story really is about, how God is our story not the incidents that mark our lives. I so enjoyed every minute of the heartfelt worship and all the sessions and spending time with other women( getting to know them). What a nice respite and recharge for my soul. At one point in the weekend I was reminded of a night I sat on the transplant unit at Duke University Medical Center with Nolan during some of his sickest moments a few days before a second code. I wrote about the blessings I felt at that moment. Here is what I wrote:
"Sunday, April 13, 2003 8:22 PM CDT
Day T 9 Grow Cells Grow!!!
Nolan has had another day of high fever. He peaked at 106 around 3:30 am. We now have the air blanket (not really a blanket, it is a blue tube thing that goes on the sides of his bed and blows cool air all around him) He really doesn’t seem to mind it much, he has been very lethargic today, sleeping much of the day. Still holding on to the little balls (even in his sleep), he tried to play a little but now needs assistance to sit so it was not as much fun for him, he also shakes when we sit him up I hope when the fever goes down he will be back to his old self. I ache to see him smile today. I just don’t think he has it in him. Our low temperature was 101. Wow never thought I would think that was good. But here the normal good doesn’t always look that good. He looks pitiful laying in his crib with no clothes except diaper and his line dressing (we have a new kind of line dressing right now, His sites look puffy and red so we are now having to change them daily and put some medicine on them) I took some pictures of him sleeping with the cooling tube in his bed holding on to the balls. I will try to get them on the photo page sometime this week. He is still cute as a bug even when he is very sick.
Today as we took care of Nolan, making sure he was a comfortable as we could make him, I started thinking of the old hymn Count Your Many Blessings and I mentally started making a list of all the blessings I have counting them one by one. As my list grew I reached for a pad of paper and started writing them down, here are just a few: Insurance to pay all of transplant bill plus most of housing
Nolan’s good disposition, smiling through most everything
Marybeth – a stranger, called from God to come care for my children while I am gone
Many friends donating air miles so my kids can fly to see me often
ICAT being so flexible and generous with Sam
Spending money coming in the mail
Mom coming for extended period of time
Wonderful, loving nurses who really care about Nolan and me
Dedicated, brilliant doctors
Duke University Medical Center
Other Moms here that I connect with
Shawn and Michelle moving to Colorado (keep praying for this reality)
Holly Strickland
Andrea Bell one of the best neighbors ever.
Orchard Glen Subdivision – the best neighborhood ever, cooking meals until June so Sam doesn’t have to
Bunko girls
Pastor Dewayne and Beverly Bartley
Mountain View Southern Baptist Church
First Baptist Church Katy & Choir
A Christian owned ballet school for Kenzie – Reverence and Ms. Vera
Supportive family, in-laws, extended family
Supportive strangers
A free Country
My three beautiful children
Sam
And my salvation
I could go on and on but I think y’all are probably bored hearing about my many blessings. You can see my cup is running over with blessing from the Lord. I try to count as many everyday as I can, even the small things that most would not see as blessing like holding my feverish son until he falls asleep, cleaning mucus from his throat so he can breath, changing yucky diapers and dirty sheets at all hours, sleeping only minutes in a night I treasure some of these blessings the most because I can still do all theses things for my baby. I know so many who do not have that privilege any more and would give any thing to clean up throw up at 2 am.
May you all reflect on the many blessings in your lives tonight and give thanks to the one who provides them.
“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete not lacking anything.” James 1:2-4"
Transplant days were such a hard time and yet we have faced many more since that moment, this year has been especially hard for me as we moved away from supportive family and friends and faced two major surgeries, mine in November and now Nolan and the long halo recovery process and still facing two more surgeries for him this year. We have decided this is the year of surgery! Since we have been here in Maryland I have struggled to “See” the plan or the purpose. I know that my plan is not always the plan God has in store for me and that His plan is the better one even when I can not “See”. 1 Thessalonians 5:16 “ Be joyful always; 17 pray continually; 18 give thanks in all circumstances, for this is God’s will for you in Christ Jesus” I have been reminded once again to count my blessings for there are many all around me! We are blessed…
- to live near Johns Hopkins Medical Center (world renowned medical care)
-for new doctors who really care (and are thinking of us outside of the office, Dr. Ain)
-to have friends that have been faithful to pray for me and some that have come to visit and be with me (Rhonda, Cheryl, Juliette).
-for Grammy and Grandpaw coming not once but twice since our move to Maryland to help with kids, Nolan and me!! (Grammy staying for 5 weeks)
-for new friends to share this life with (April, Maureen, Jen, Nancy)
-for a sister (in-law) who reaches across the miles to love me right where I am.
-for outstanding kids who work hard in school and who love the Lord as much as we do.
-for wonderful Christian friends for my kids.
-for a group of bible study women who are faithful to pray for my family.
-for our beautiful new home and community (Summer Hill, Grace Fellowship).
-a nice family that leases my home in Colorado.
-for Jacksonville elementary and all the staff and loving teachers we encounter there.
-for All Risks, a job Sammy loves and is excited about.
The list could go on and on and it does everyday. We have been so blessed at every turn. Nolan continues to do well 5 weeks tomorrow post surgery. Only about 7 more weeks or so to go until he will be freed from the all restrictive halo, we will see Dr. Ain on March 12th, when we hope to hear of a date for the halo removal.
Home/Hospital School started last week and seems to be a good distraction for Nolan. We have a wonderful tutor Ms. Edmonds, she comes in a few hours each day and has class with Nolan. I think his charm is beginning to work on her, for while I sit in the loft office above where they are working I hear giggles from her and Nolan. Yesterday in an attempt to wonder off the subject of science, I heard him ask Ms. Edmonds do cows really drink milk from the utter with their mouths to which she answered yes like all mammals do, to which Nolan said Yuck! Then I believe he asked if he did this and then he asked how are babies born??? Hmmm she kindly referred him to his mother. Hehe I think she may have got more than she bargained for with Nolan.
I want to say a special Thank You to Jacksonville Elementary, the Jump a thon today is dedicated to the MPS society in honor of Nolan. All the funds raised will be donated the MPS society. We thank you so much. We are sorry Nolan could not be there to cheer you all on.
Grammy has made her way home. We will miss her so much. It was so nice to have her here for the whole month.She was so helpful with the care of Nolan I have felt lost the last two days without her here. Most importantly who will watch all the past episodes of Downton Abbey with me now!! We love you Grammy! Thanks Grandpaw for loaning her to us!!
Friday, February 15, 2013 8:52 PM EST Thank you and more Thank yous!
So many well wishes, gifts and cards coming from neighbors and from friends afar! Nolan has been so thrilled to receive the boxes in the mail. LES (Ms. Elaine, Sarah and crew ) thank you for the thoughtful box full of fun activities/candy and cards. You made his day, he said he almost cried (mommy did shed a tear) we were so touched by all the cards from all the kids, Nolan misses them all so much. An adorable pillow case from MeMa and Pap pap (Linda and Barry) A box full of candy from Nana and Uncle Bubba, what more could a boy need. A bag full of games and another meal from our neighbors(The Bolands) down the street! You all will never know how much it means to Nolan, he gets so excited! A thousand Thank yous!
The daily routine will be changing once again. On Tuesday the home/hospital school will start. Our tutor, Ms. Edmonds will come Mon, Tues 1:30-3:30, Wed 12-3:00 and Thurs 8:30-11:30. Ten hours of school! Not sure how the little guy will like that! I have already warned Ms. Edmonds that Nolan is easily distracted and she might need to bring a bag of tricks! Of course I was reminded today by Ms. Kelch that Nolan will probably have her charmed in no time at all, she won’t know what hit her and will walk away wondering why they didn’t get any work done! So our days will be filled with school and rest time and I am sure he will fit some time in on the computer or IPad. Can’t wait to see how Tuesday goes!
Nolan seems to be back to his old self, except for the titanium contraption on his head. Healing seems to be well on its way. The final steri strip fell off today, the incision looks great. I can not see the incision on his hip it is hidden by the vest, so not sure how that one is doing. Not much to report on the health front as now we just wait to heal. Grammy and Daddy have both been ill, one with sinus infection, bronchitis and the other a cold. Both seem to be better today. Pray that no one else catches the bug!
Thursday, February 7, 2013 9:56 AM EST Overwhelmed
This morning we are overwhelmed with the love that has been shown to Nolan from Jacksonville Elementary School. Last evening one of Nolan’s teachers Ms. Minogilo came by the house and brought a basket that was a collection of cards and gifts from the students and teachers of Jacksonville. Surprised, pleased, excited, thankful and overwhelmed are the emotions that flashed through me as I watched Nolan examine the contents of the basket, there were cards, games, gift cards, cash, candy, and items to keep Nolan entertained over the next 10 weeks. Wow is all I could say. We have been blessed with an awesome community at Jacksonville. Nolan is excited to read all the cards from his classmates. He misses them all so much. It has been nice to have visits from teachers and students to keep Nolan in the loop. Thank you Thank you JES!!!
When we moved here one of my biggest regrets was leaving a school with such a loving accepting student body and staff, LES was a wonderful school that had been apart of our lives for 10 years, I consider many of the teachers and parents there my friends and remain in contact with them today. It would be a hard school to compete with or replace. God knew my fears that Nolan would not be as accepted and loved as he was at Lafayette. Many of the teachers and therapist had been with Nolan since he was 3 years old. We were so sad to leave them and I doubted our decision to move based on there could never be a place as wonderful as LES that would care so much for my son. But here in Maryland we have found the Jacksonville community to be an accepting, loving, and caring school. It only took moments for Nolan to make his award winning personality known. Nolan has won the hearts of many of the staff and students at our new home JES. It was such a pleasure to read all the cards this morning from his classmates. As Nolan says he is popular! I can not express what this has meant to me, what a relief it has been. Nolan has so much to deal with on a physical/medical level that is a blessing he has such wonderful people in his life. I know he can not wait to get back to the halls of JES!
It never ceases to amaze me how Nolan affects people. His reach is so vast. People we have never met seem to know him or know of him. His positive attitude is amazing to me. I love this kid, I don’t know how he became this amazing person that touches everyone he meets. It’s a God thing! I fear I would not be as positive as he if I were faced with the same circumstances. He is never down for long!
Yesterday I went to an IEP meeting at the school to get the Home/Hospital School started soon. We should be assigned a teacher and then Nolan will be getting up to 10 hours a week of school. I think this will be a good addition to his day and keep him from getting too bored with Mom and Grammy. I am sure we will have some interesting stories to tell of our school days!
Monday, February 4, 2013 12:12 PM EST Ravens Ravens Ravens!!!!!
Nolan is doing awesome! We went on Friday to see Dr. Ain for a quick check and all looks well. He took an x-ray of the neck and Daddy got to take a look, he said it was looking exactly as it should be at this point. We got to ask a ton of questions that had popped up over the week and Dr. Ain had a special surprise for Nolan. Since we moved here Dr. Ain has been trying to gain the position of favorite doctor over Dr. Erickson from Colorado (they are good friends and now rivals for Nolan’s affections) He thought letting us out earlier from the hospital than Dr. Erickson ever has would do it but not quite, so he went on a search for a special gift for Nolan. Dr. Ain has a neighbor, Matt Birk # 77 from the Baltimore Ravens who gave him a signed football for Nolan. You should have seen Nolan’s eyes when he saw the football, it was a great moment! Dr. Ain knew Nolan loved his new team the Ravens because he had an R shaved into his scalp the day of surgery! Dr. Ain asked Nolan if he was his favorite doctor now and Nolan as usual gave him a hard time and said no Dr. Erickson was still his favorite! Gotta love Nolan’s honesty. (Although secretly at home Nolan did say he would now call Dr. Ain his favorite. Sorry Dr. E.) We have had a fun time this weekend celebrating the Ravens! Even Cooper cheered for the Ravens yesterday (He is still a Bronco fan at heart). We did not have our usual big Superbowl party but Cooper had a couple of friends over and Aunt Chell and I Skyped while we watched the halftime show together, not quite the same but it worked. We miss our Colorado Family and Friends!
Nolan has been sleeping well and his appetite has come back to normal. Not sure how he sleeps so well with that halo but he seems to sleep through the night only on occasion now does he ask to be turned or moved. Sometimes he is grumpy during pin care, but can you really blame him, we take hydrogen peroxide and rub the skin around the 8 pins with a long cotton swab to ensure that the skin does not grow up on the pin and we do this twice daily. Ouch! Some days seem to go more smoothly than others, he sits in his wheelchair in the mornings playing wii games or watching tv, lays in the bed in the afternoon napping and watching a movie and then sits in the wheelchair again in the evening to visit with the kids and have dinner with the family. We keep trying to change things up for him but there is only so much we can do. For the most part he has adjusted and his great smile has come back and he jokes with us and laughs. I know he is still healing and there are moments when he is in some pain and has tingling in his back ( Dr. Ain said this was normal) He also has some pain at the site on his hip where they removed bone for the fusion in his neck, the incision is bigger than I thought and it is under the vest so it may not heal as fast. I don’t know how he does it! I would not be as cheerful or patient I think if I had to go through this or any of the surgeries that Nolan has been through. He makes it look easy, when I know it is not.
Nolan has received some really cool gifts since surgery, thanks to Ms. Behm for the Ravens football man, giant Ravens pencil and yummy Berger cookies, to Ms. Sullivan, Ms. DuCroix, Ms. Coughlin for the cool Ravens Blanket, to Rhonda for the yum yum Ravens cookie bouquet and Jelly Belly’s, to Zach and Adam for the fun toys, to Robert, Grace and Elizabeth for some cool cash(saving for a new Wii U game) and finally to Dr. Ain for the awesome football! Mom has received a delicious meal from our neighbor Nancy Boland, thank you thank you, you made life a bit easier last week! We feel so blessed by the out pouring of love to Nolan and all of us.
Want to mention a little girl at Nolan’s school who is going through a relapse of cancer and she is in treatment at Hopkins right now. Her name is Ava Sophia Daniels, she is a kindergartener at Jacksonville. They are getting her ready for a bone marrow transplant, transplant is such a tough long road, especially if you are as sick as she is when you start the process. My heart and prayers go out to them. Nolan was so little when he went through transplant that thankfully he has no memory of the pure torture that you go through in transplant. I pray that Ava will have no memory of it either and she will grow to be a beautiful young woman who can share her story to help others along the way.
http://www.carepages.com/carepages/avasophialeukemiawarrior
Wednesday, January 30, 2013 10:15 PM EST Let the Healing Begin
Life is certainly never boring at the Ramsey’s! On Monday morning we caught Nolan sitting up on the side of the bed by himself! At 4:30am Nolan called out mommy and I jumped up to find him just sitting there. Yikes it might be a little harder than we thought to keep him down for three months. He is not supposed to move without our assistance, it is to dangerous for him to be moving himself around. We help him roll over, sit up, move to the wheelchair or the sofa. So far the days have fallen into a routine of a sort, Nolan is in good spirits most of the time if he gets his afternoon nap. Grammy and I use naptime to catch up on the Downton Abbey series, we are up to Season 2 Episode 7 and loving it! Nolan has had several visits from friends in the neighborhood and from school, Bobby, Katy, Joey, Neil and Ms. Behm, thank you all, you have made Nolan feel so loved. Thank you also to Mrs. DuCroix, Mrs.Sullivan and Mrs. Coughlin for the wonderful Ravens blanket, it is a must when he sleeps now. Also to Zach and Adam Caudill for the great water gun, craze beans and lego thank you thank you!!! Nolan was so happy with all the special gifts.
Friday we will go for a visit to Dr. Ain, for our first follow up. Nolan has been having some tingling in his back, but other than that his pain seems to be minimal. Can’t believe a week ago tonight he was in PICU on a vent. He gave me the award winning Nolan smile as we put him to bed tonight. I thank my heavenly Father for the special gift of Nolan. With all the heartache, surgeries, disappointments that is forever present in his life I can not imagine a life that did not include him. Last Thursday January 24th was the 10 year anniversary of Nolan’s diagnosis. I am easily transformed back to that day, I remember standing in my closet calling my neighbor Andrea Bell telling her that Dr. Bricker wanted to see us and Sam should meet us there. My heart sank with the impending news we would hear. Andrea bolted into motion and offered to drive me to the office with all of her and my children in tow. When Dr. Bricker said the appointment was not going to be easy or short, Andrea took Cooper and Mackenzie with her to her home and left Nolan and I with Sam sitting in Dr. Brickers office waiting to hear the fate of our sweet baby boy. I remember Winnie the Pooh on the walls and a text book on the table, I know they collected urine and blood and said not to go home and look up information on the internet(of course we did). I remember driving home that evening stopping at Mountain View Church and praying with Nancy Williams. When we reached our home, we just sat with Nolan in the living room and stared. Andrea had arranged food for the night and kept the kids at her house until late in the evening. Beverley and Dwayne Bartley came to sit with us that night, we prayed and we cried. When we called my mom, we received news that my cousin Tim had been shot in a hunting accident and was in critical condition. It was a night to remember. We called Sam’s brother John to tell him of the diagnosis MPS, John surprised us and said he had heard of it and he knew of a treatment his boss’s son had just been through. Dr. Joanne Kurtzberg called us a few days later. Then soon our Duke journey began. It all seems like it was yesterday. Ten years later we give thanks for the precious time we have had with Nolan. We give thanks to the numerous doctors, nurses, therapist, paras, and teachers who have been a constant part of our journey. We give thanks to all the friends and family who have walked with us through all the ups and downs and who remain by our sides to this day, praying and supporting us every step of the way. We love you all.
Sunday, January 27, 2013 9:41 PM EST Home Sweet Home
Nothing like three days post surgery and getting the go home news!! This was the quickest hospital stay we have ever had. Next time I think we will try going home from PICU! Doctor Ain rounded at 7am yesterday and asked if we were ready to go. At that point Nolan had not even sat up in bed and only had one good solid meal. So we had to accomplish a couple of goals to go home, like sitting up and getting out of bed. It took us a little bit of time but we were packed and ready to go by 5pm. Daddy had to do some work on his end at home getting the house ready for Nolan’s return. He is super star dad, he got a hospital bed, wheelchair and over the bed table by 11:30am on a Saturday!! That was pretty quick!
Ahh how wonderful to sleep in your own bed, even having to get up two or three times a night to check on Nolan and turn him was better than sleeping on the small pullout bed in the hospital room. Nolan slept so sound for the first time since surgery. We have had an uneventful day today(that’s a good thing), as we try to adjust to our new “normal” for the next three months. Nolan will be doing lots of sedentary activities: Wii U, IPad, videos, napping. He has strict instructions from Dr. Ain, no walking or no crawling the entire three months. He got up this morning and asked ”what are we going to do today”, it will take some getting used to staying home all the time, we are a busy on the go family. I am sure after a week or two the boredom will set in. Nolan loves to skype or facetime so if anyone is interested!!! Grammy will be here with us until February 25th so that will help us keep him entertained. Grampaw leaves tomorrow.
I am so thankful for all the prayers, I can feel God’s presence surrounding us every step of the way. I have been calm and clear headed throughout the surgery, hospital stay and now at home. I had thought I would be more stressed with this new ordeal. The halo is not as scary as I thought it would be or as heavy. It does add some height and girth to Nolan but after a few days it is slowly becoming apart of him. He complains that is it hot around his tummy and back, but it does not seem to hurt. Even though looking at it with the eight pins attached to his skull you would think that it would cause him pain. On occasion he says he has a headache. He seems to just accept the halo and he is learning how to move with it and what his limitations may be. I would not be as brave I fear, just the thought of having a non removable vest covering my entire trunk would have me hyperventilating, not even thinking about the titanium hardware attached to the head! My brave little boy is my hero, he endures so much without much complaint. We made many new friends this week, wonderful new doctors and nurses all eager to get to know the new kid from Colorado, we answered many questions about the other hospitals that we have been a patient. We told our story over and over. We felt welcomed and loved. They all seemed amazed how well Nolan did after surgery and how fast he was released. I will keep you all posted on the adventures of Nolan at home, I am sure there will be some interesting things to report!
Friday, January 25, 2013 4:18 PM EST Sights and Sound of PICU
It’s been a while since I sat alone with Nolan in the PICU. Beeps, Dings, Bells, the flowing sound of oxygen and ventilators come from all areas. The lights never go out in here, it is perpetual day, you lose track of time, is it Thursday? or Friday?, is it 4am?or 4pm?, we are lucky our room actually has a window to the outside I can see the night fall. In our room there is also a window to the room next to us where a little baby not more than a couple of months old is on a vent, his name is Matthew, he lies in there alone, we have been here more than 48 hours and I have not seen anyone in his room but the nurses or doctors. It seems strange to me, I can not imagine leaving Nolan in here by himself. Even when he was a baby in PICU I was there as much as I was allowed only leaving when the staff forced me out for rounds. I try not to judge the parents, who knows why they are not here, maybe it is too hard to sit here day in and day out waiting and watching, or maybe they have to work. I said a prayer for them and for Matthew, he is so little, I stood in our window watching his chest rise and fall praying for healing and strength. On the other side of our room the code bells ring every little while, the staff rush into the room all in the yellow gowns and mask pushing machines and supplies, they gather around his bed working on him, a little boy maybe three, I don’t know his name, but I see his family passing our room on occasion, his mother wears a burqa I have not seen her face. There are several others that come to visit him. I pray for him when the bells sound in his room, I know when he is about to code or go into cardiac arrest the monitor in our room has his vitals as well as Nolans, I sit and watch his heart rate go from 98 to 245 in a matter of minutes and his BP bottom out. I am so thankful that Nolan is doing so well and that we are not that sick anymore, we have been where they are when everything can change on a dime. When you constantly watch the monitors for signs of change, you ask the nurse constantly for numbers from the blood work. My we have come so far. Not that this surgery was not major, because it was and that wearing the halo will be easy because it won’t, but Nolan is strong and nothing seems to keep him down. He has a real can do attitude, he was asking today if he can take a walk later, not sure they are ready to have him out and about with his halo!
Today has been a really good day, Nolan’s pain is managed well. He has had some spasms in his back but they are giving him valium for that. He ate solid food for breakfast and lunch and he is almost done with the oxygen. I think when they take that off we might get to move to a room on the regular floor. He has not been up yet, although he is setting higher in the bed today without feeling sick, progress! Funny story I was reprimanded by one of the nurses today for silencing a pump, I was told to never touch the pump, I might mess something up! I just said sorry I have been a transplant mom for way too long! I forget I am at a new hospital with new rules! Sam didn’t get caught doing it on Thursday!
Looks like we are moving soon, the nurse just came back in and started getting us ready to go upstairs. Yeah one step closer to home! I will update again tomorrow maybe we will be up and walking!!! Pray for Nolan that when we do get up to move around that it is not too painful and awkward. Pray that he does not get frustrated, we have a long recovery road ahead of us.
Thursday, January 24, 2013 7:48 PM CST Nolan had a restless day today. They did take the intubation tube around 12pm today. He did well with the transition. He was still on 100 % oxygen when I left the hospital at 4pm. After the tube was removed he slept for a little bit but now he is uncomfortable. I think it will take some time getting used to the halo. Sam is staying with him tonight and I came home to catch some good sleep. Sleep last night was almost nonexistent as Nolan was very agitated. I will go back in the morning. I feel his fear of the halo, it is awkward and heavy. He is such a trooper and a fighter. What a brave little boy. Not much action today. They are working hard to make him comfortable. Maybe tomorrow we will move to a room. For now PICU has been great. I appreciate all the doctors and nurses, they have been so attentive and Nolan has already charmed so many of them. Even in an agitated state. Sorry so short tonight but I am tired and I am headed to bed. Pray for Nolan that he is comfortable and that he adjust quickly to the halo.
Wednesday, January 23, 2013 9:40 PM EST What a long day! Funny, I always thought waiting at a new hospital might be different than waiting at Denver Children’s or Duke, but it is not. Hopkins is very much the same, semi comfortable chairs, very pricy food, cold spots, hot spots, TV’s high in the corner, the electronic patient board with the green, red, and purple colors to indicate the surgery status each hospital is very similar in décor and procedure. As I have sat here today watching families waiting for the news of their child I have been wondering what has brought them here, what ailment, or injury, is it an illness or a genetic disorder, Nolan has spent more than his fair share of time in an operating room and Sam and I have spent many an hour waiting, praying, hoping for a better chance of a fulfilling life for Nolan.
Surgery went well today, upon arrival this morning Nolan was chipper and joking with Dr. Ain showing him the R dad had shaved into his scalp for the Ravens. We tried to make shaving his head a fun event. We had to shave prior to the surgery and application of the halo. The intubation seemed to be one of the more difficult parts of the surgery process, it took about 2 ½ hours to get the tube in and everything stable, we seem to have a very difficult airway! (now made more so with this fusion) Dr. Jallo, the neurologist removed a vertebra and decompressed the spine, he said it was a lot tighter in there than even the MRI indicated. So the hope is that this will let the spinal fluid flow better and give him some strength back in his legs. Dr. Ain, the orthopedic surgeon fused the spine from C1 – C3, less than he thought he would have to do. The halo was placed with 8 screws around his head. All in all the surgery lasted 7 hours. Nolan is still on the vent in the PICU. He is very agitated and uncomfortable. He has been trying to communicate with us over the vent and is very frustrated that we can’t understand him!!! We are frustrated because we see his tears and don’t know what to do. The nurse can not get him to sleep and rest for very long, they have been giving med after med trying to get him to a nice sedated level. No luck yet! The plan is to take the intubation tube out tomorrow in the OR, so they will be prepared if they have to put the tube back in. We hope this helps with the discomfort and distress he seems to be having tonight. It’s so painful to watch him struggle for comfort and not be able to help him. He has been sick several times due to meds and being moved around a bit which is not fun with a tube down your throat and a halo/vest attached to your head.
The halo looks so very uncomfortable, I can only imagine what is going through his mind tonight. It will take some getting used to. Sam and I both are staying the night in the PICU, this is the first hospital that we can both stay in here 24/7. Tomorrow I think we will start alternating nights until Nolan comes home. No word on when that might be.
Thank you to everyone who prayed for Nolan today, we are so blessed to have so many prayers being offered for him. I received numerous emails, text and FB post with prayers and well wishes, thank you all, please forgive me if I do not respond to you right away, it is a little stressful here tonight, just know how much it means to us that you have reached out to us. Please continue to pray for him when you think about it, I fear the worst is yet to come for Nolan as we start the long three month recovery process, he will need lots of love and patience as he heals. I know Grammy, Cooper, Kenzie, Sam and I will also need lots of prayers, love and patience!!!
Sunday, January 20, 2013 10:19 PM CST Such a long time since I have sat down to write a journal entry. On Thursday it will be 10 years ago that we learned about Hurler Syndrome, in February it will be ten years that I have been making journal entries on this website. 10 years of ups and downs, joys, disappointments, hope and all the adventures of Nolan’s life. Our lives were changed forever in the course of a few moments spent with Dr. Heather Bricker in her office. Along the way we have met so many doctors, nurses and hospital staff that we consider close friends that have made such a difference in our lives. This week on Wednesday morning we will once again start a new adventure/trial in Nolan’s journey. Nolan will undergo cervical spine surgery here at Johns Hopkins, he has one of the best orthopedic surgeons and neuro surgeons available. He will awaken from this surgery with permanent limited movement of his head, also for three months he will wear a halo to help keep his spine stable while healing. We once again covet the prayers of our friends and family as we begin this long recovery process. Sam’s mom and dad arrived Thursday, his mom will be here with us until February 25th. I am so thankful to have her to help me with Nolan’s care. We have been so blessed to meet many wonderful people here in Maryland who have been so loving and supportive. I will post on Wednesday when Nolan is out of surgery. The surgery will start around 7am and should take a better part of the day.
Wednesday, July 13, 2011 10:27 AM CDT Hello Nolan Peeps,
Sorry for the delay, Kenzie and I were in Texas this weekend for Aunt Rhonda's wedding shower, so Nolan stayed home with Dad and Cooper. Nolan is doing so great!!! He is up and moving around with a walker, sometimes the wheelchair and sometimes all on his own!!! We are so proud of him, he still has some pain if he has been up to long, we forget it has only been three weeks since surgery because he is feeling so well. This has taken the doctors by surprise, because this surgery was suppose to be worse as in more painful then the spine surgery he had two years ago. It took four months before he was really feeling well the last time. Just goes to show never underestimate what God and Nolan can do!!!! My kid never does what they expect!!!
The doctors also said we can make the trip to the wedding in Abilene next week as long as we stop A LOT and let Nolan move around, this has made him very happy!! Doc also said he can start back to swimming lessons, but not Karate. He said maybe after school starts for Karate. Nolan still gets very tired and will catch a nap here and there, we haven't had him out much, so the trip may really wipe him out!
A fun thing this summer is Nolan is on a virtual trip with one of his friends from school, Tony and his family, they are posting regularly with pics of Nolan in different locations along the way. Here is the link to their updats: www.aietaride.blogspot.com
Nana has finally made it back to her home after 6 weeks in the hospital! She seems happy to be there, even though I think her recovery will be long. We plan to stop by while in Texas for the wedding.
It has been extremely busy this summer despite the surgery. With showers, wedding stuff, football,Cooper's karate prep for his Adult Black belt test, dance, etc. I am looking forward to school starting August 15th so I can get some down time!!! Of course that is a pipedream because dance and football will be in full force!!!
Nolan will go back for another follow-up the week before school starts, so hopefully he will be released for full activity!
Paloma has been gone almost three weeks and we miss her very much, we forget sometime and still ask where she is! It has taken some getting used to not having her here.
Thursday, June 30, 2011 7:15 PM CDT So sorry for the lack of info!!!
Nolan is Home! He came home on Sunday afternoon. We spent four days in PICU and two on the 6th floor. That was the quickest release ever. We fully expected to be there until tuesday at the earliest. Nolan has done soooo well. We are so thankful for all the prayers that were said on his behalf!!! We have all been amazed at how well he is doing, docs included. His pain has been managed very well, he has only complained a couple of times that it really hurts. He is up and moving around some so we take this as a good sign, that he will be back to his normal little self soon. We are even considering taking him to Texas with us for Sam's sister Rhonda's wedding at the end of July. Originally he was going to stay here with some friends. This surgery was supposed to be as long or longer recovery than the surgery two years ago.
Nolan started therapy today, he walked about 20 feet and did some stretching. He will have this twice a week for a while.
He still has a while to recover but as things stand right now he is making remarkable strides!! Praise the Lord!
My mom is still at the rehab center but will move back to the hospital on Tuesday and they will get her ready for surgery. They will be removing her gall bladder, it will be risky with her heart but they think this is the better option. Then she hopes to get to return home after recovery. Please keep her in your prayers, her heart is always a concern and issue. She will be at Presby Dallas again.
Thanks again for all the prayers, cards, gifts, calls and food, we truly appreciate all of it. It really makes a difference!!! Special thanks to Aunt Chell and all she has done during this time, organizing food, taking care of business stuff and so much more, we love you soooo much!!!!
Saturday, June 25, 2011 11:35 AM CDT Nolan is doing fantastic, we couldn't ask for a better recovery!!!
He got up this morning and walked to a wheelchair and then he rode downstairs and back up to his room. He was a little over zealous and thought he would just pop up from the wheelchair and hop into bed, well he is not just ready for that yet, so we helped him back in bed for a much needed rest. All and all he looks good and we have kept the pain managed really well. We are hoping for a Monday release, of course this is moms goal, nothing from the docs yet!
He is still stating low without O2, but they are leaving it off for now to see how low he will go. During the night we got him a little too comfy with the pain meds and the was dropping all numbers low, O2 was around 75, HR was around 80, we had to try and wake him up to make it all come back up : )
Well it looks like it is bath time, then lunch, a nap than another walk around the bed. We hope to see our cousins Hunter and Chase today, they have been waiting to see Nolan since Tuesday but were not allowed into the PICU.
Thanks so much for all the prayers, God has really put Nolan at peace and he is so relaxed about it all. Even the mask has a new meaning for him, he used to be so scared of it. He is like a different kid. He lets them stick him, put the mask on , do breathing treatments, whatever they want he complies : )
We know this is just another blip in the road in the story of Nolan, thanks for coming along with us!
Wednesday, June 22, 2011 3:48 PM CDT Good Afternoon Nolan watchers,
We are still in PICU today and will remain here until tomorrow. They did take the breathing tube out at noon and he is breathing well with 100% O2 right now. They are using blow by as Nolan does not like anything on his face.
His pain has been controlled and he seems to be feeling alright. He is sleeping a lot now that he does not have a large tube down his throat. He was very agitated this morning everytime the nurses would mess with the suction tube. The Doc's said they measure progress by tube removal. So we are two less tube this afternoon(they had to remove the catheter because it would not flush, that tube may get put back in later today if all does not go well in that department, not looking good for it to stay out yet), next tube out will be the NG tube (we hope), the Art line should follow then maybe on Friday or Saturday the chest tube. Then we will really be on the move!!! Plan is to go to a regular room on the 6th floor tomorrow. PT came by this morning and said we would not even try to get up until tomorrow (it will be great trauma when this happens).
All in all things are moving in the right direction. Nolan has had some pretty fantastic nurses and doctors, this is why we love The Children's Hospital. Thank you Danielle, Karen, Ryan, Dr. Erickson, Suzy, Elies, Lynn, PICU Doc (can't remember your name), Mary, Eliene you all rock! Thanks Mary and Eliene for the "Underdog" and visit!!
Thank you Andrea and Libby for the great art work on our driveway yesterday, we loved it and thanks Andrea for coming by today, what a great surprise!!! It get's to be long days in here.
Paloma's last day in Colorado is today, we will take her and the family out tonight for dinner. Our good friend Kurt is coming to sit with Nolan so we can all have one last night out with her. Today she has been shipping home some items that would not fit in her luggage. She leaves tomorrow morning for New York then on to Spain tomorrow night. We have enjoyed having her with us this year and will miss her soooo much. Can't believe the time is up already. We wish you well Paloma and can't wait to see you again in the coming year: ) Skype us!!!
My mom is settled in at the skilled nursing facility in Rowlett. She was not very happy this morning, they have not been taking care of the drain like they should and she is worried that she will have to go back to the hospital. I hope she gets it all worked out and is happy there for the next few weeks.
Well that is about it for now! They are about to do some breathing treatments and suction this should be fun!
More later!
Tuesday, June 21, 2011 2:20 PM CDT ****Okay so let me try again, I just typed out an update and hit the wrong button and it all went away!
New update
Nolan is now resting in PICU. He has a large chest tube and an 18 inch incision reaching from under his shoulder blade under his arm down to his bellybuttonish area. The PICU nurse said she has been here 20 years and never seen a chest tube that large before and they said they are very painful. Nolan is 100 n the vent right now. His mouth and tongue are very swollen. They had a hard time intubating him and had to use the scope (they haven't had to do that in years) He is looking a little like Frankenstein right now. He tried to wake up a few minutes ago and had huge tears running down his face. I talked to him and told him not to move around but we were here with him, we asked him if he was in pain and he nodded his head yes. His heart rate was around 168 and his BP was around 165/80. They upped his pain meds and started more fluids. He seems to be resting better now.
Sam and I are both sitting in here with him and it has brought back some pretty vivid memories from transplant and not the good ones.
It has been a long day! My mom was moving to the nursing center today, I talked with her right after we heard that Nolan was out of surgery. She seems to be doing ok.
I dread when Nolan comes fully awake, he is not going to be very happy. He is now running a fever. It could be a long night! Keep the prayers coming. Thank you all for being such faithful friends. Much love to you all.
So here we are once again waiting in The Chilren's Hospital surgical waiting area. It feels like we are in the movie "Groundhog day" Sitting in the same area with almost all the same people as we did two years ago, for the same type of surgery. We are expecting updates every hour from the OR, first one just came a few minutes ago. They took him back @ 11:30, did setup and made the first cut @ 1:00 straight up. We expect to be done around 5pm or so.
Nolan was very scared this morning, I think he was remembering the surgery from two years ago. He was getting very upset, but they let him take his pillow pet and his Ipad back to the OR and he sang himself out, it was the best we have every seen him do with the mask going to sleep. He was singing to "He's my son" very sad song but he said it makes him feel like he is going to be ok. We were all laughing as he sang with the mask over his face, then he went out like a pro! Grammy had the privilege of going back with Nolan and mom, there are some pretty funny pics on Facebook! We love the new Ipad!!!! If we would have known it would help him go out so well we would have gotten one the moment it came out!!!
Nolan had a fun surprise this morning when he woke up, some very special friends came in the middle of the night and left huge chalk messages on our driveway and walk. Nolan loved it!! (pics on FB)
So it looks like after surgery Nolan will go directly to PICU for the night and maybe the next day. He will have a chest tube for three to five days and may still have a breathing tube. We are not even going to give a guess of when they think he will go home, maybe a week. Sam and I got a "sleep room" for the next couple of nights so we will both stay. Grammy and Grandpa will be with the other kids at the house.
I will give another update later as we gain more information.
Friday, May 20, 2011 9:53 PM CDT DATE FOR SURGERY IS NOW TUESDAY JUNE 21, 2011
Hello all
Nolan has recently had trouble walking and getting around so we took him in to the orthopedic doctor and they ran an MRI and did not like the results. They then ordered a CT to verify what they were seeing on the MRI. It appears that the area where they removed a vertebrae from his spine two years ago has grown back with some bone and storage stuff. The bone is pushing into the spinal cord causing an impingement with no spinal fluide around the spine (painful). This is what they believe is causing Nolan's pain and discomfort when walking. He has been crawling alot, so we know he is in pain even if he never says he is.
Nolan will be having major back surgery again on Thursday, June 16th. I don't have all the details yet, but they said it would be a long one, they have to go in through the front as to be able to reach the area of the spine they need to. 10 or so days in hospital, recovery 4 months or so. I should have more info soon.
Looks like another fun summer for the Ramsey's!
Tuesday, January 4, 2011 5:25 PM CST Happy New Year!! Nolan is doing great. He had his port removed in September! A big milestone for him. A small setback has been the hypothyroidism, he now takes a small pill everyday and has to have labs every few weeks to monitor his thyroid levels(labs without the port have been interesting to say the least). Nolan finally had his carpal tunnel sugery a few weeks before Christmas and his hands are healing very well. The next big thing will be begining the growth hormon injections. All the paperwork is being done and we have to have an MRI and one more test in the office before he starts taking the shots, he will have an injection six days a week given by Sam or I. Just one more thing my baby has to endure! Nolan is kind of excited that he might lose a little weight and grow a few inches with this treatment, even though he has to get stuck everyday.
We will leave for Disneyland February 19th - 27th, we thought it would be nice to take our exchange student Paloma from spain. The kids are very excited to miss three days of school! We are also taking Cooper's girlfriend Aynsley, she does not like to ride any roller coaster or scary rides so she will be Nolan's riding buddy for the trip, she is very excited about this. We are all looking forward to a great trip.
That is about all the news I have for now.
I attatched our Christmas letter below for those that I don't have addresses for:
Merry Christmas from Colorado 2010
This year has been a busy time for the Ramsey’s. Kenzie and I started the year with a birthday trip to Wimberley Texas with Reagan and Holly Strickland. We had a great time with some old friends. Sam started the year with a trip to London for work; he went again in November and will be going in early January. The kids all wish we were going with him!!!
In June Sam’s sister Michelle and I took a two week jaunt through Texas with all the kids. We stopped in Dallas, Georgetown, San Antonio and Abilene. It was sooo hot but a great trip seeing a lot of family and friends. It was good to get back to the cool Colorado climate. I also started working at Macys on the merchandising team this summer to add to the craziness of our lives!
In August I jetted off to New York with my best friend from high school Rhonda, we knocked the city on its ear!! We saw two Broadway shows Mamma Mia and Phantom of the Opera, we toured the empire state building, statue of liberty, central park and had a lot of great food and wine. I always love New York. Sam flew in on business for one night and we had a great dinner with him. When I returned I was welcomed by our exchange student from Spain, Paloma. Paloma is here with us until June. She has been a welcome addition to our family. She gets along well with all the kids. She is a junior at Centaurus High School with Cooper.
Cooper started high school and played football again this year ending the season on Varsity, they won the district championship and went to the playoffs. It was very exciting for Coop. Now he is wrestling for the first time and seems to really like it. Cooper is still singing in the choir and playing the guitar. He is finishing his second black belt in February. He has been a very busy boy!
Mackenzie is in the 7th grade and is still dancing, we added another studio this year, now she dances 25 hours a week and just loves it. She is dancing in two Christmas Shows, one this weekend for Reverence and one next week for our new studio Danse Etoile!!! I can’t wait for the break! In addition to dancing, Kenzie is on the choir council and enjoys singing solos for the choir concerts.
Nolan has had some little surgeries this year, we had his port taken out and he had carpal tunnel release and a hernia repair. He was diagnosed with Hypothyroidism and is now taking a new medication to help control that. He is doing really well in school this year and loves the third grade.
We wish you and yours a very Merry Christmas and please drop by when you have the chance!
Love,
Sam, Nancy, Cooper, Mackenzie, Nolan and Paloma
Monday, July 12, 2010 2:25 PM CDT Hi all,
Not sure how many of you still check the site but thought I would post a quick update. A lot of you are connected with me on FB and stay up with us there.
Nolan has been having a great summer. He will finish up summer school on Thursday of this week. He really has loved it and will hate for it to end. He will have a four week rest than we will start 3rd grade!!! Time sure has slipped away. I can't believe we are here. Nolan impresses me more and more each day. We are so blessed to have him and for him to be moving forward as he is. Next week we have our annual meeting with the Genetic team at Children's, we get to discuss all the things we want to work on over the next year, ie hands, knees, weight and a few other issues. His back has been hurting some and on occasion we have caught him dragging his left leg, so I am sure we need to get into see Dr. Erickson. I hate having to schedule all the visits, it takes a while!!! We have stopped Photopharesis as of the June visit, so now we wait to see if the GVHD shows its ugly head again, and if it doesn't we get to discuss removal of the port!!!! I am not sure how I feel about getting rid of it, but it will make for less visits to the hospital!!! Yay!!! Nolan played Challenger baseball this past spring and loved it, it is a team specifically for special needs children, he can't wait until next spring to play again. I wish there was something else he could do, he loves to participate.
We did spend two weeks in Texas this summer, all I can say is HOT HOT HOT!!!!! We had a great time with family and friends there but I can honestly say I would never want to live there again. I love my nice cool Colorado summers!!!!I think all the family and friend should just come here from now on : )
Cooper has kept us busy all summer with football camp and early morning workouts!!! I anticipate high school to be a blast!!!! He will be playing freshman football, entering the pre-IB program ( he better keep that 4.0 up), singing in choir, finishing his adult black belt, and spending time with his beautiful girlfriend, Aynsley. He has finally out grown me by about five inches!!! The next four years should be fun!
Mackenzie is dancing her way through the summer. She is attending a dance camp with the Colorado Contemporary Dance Academy, it is a very different kind of dance than she is used to but I think it has been great to stretch her abilities. She loves to dance and really wants to focus on it. She will be dancing approx 10 hours a week at Reverence again this year and more if we can figure it all out. She will be in seventh grade at Angevine Middle and yes she has also caught me in height, not by much but she can now say without shoes she is taller!
I have started working part-time at Macy's as a merchandiser, the hours are great for me and I am always home when the kids get out of school. I love the discount part too! Sam is doing great,still working at ICAT. We hope to get some projects done around the house this summer. We also finally went to trial for the spa stuff and I can say I am so thankful it is over. Yes we won with a conviction of fraud!! I still have faith in the system that it is true and just. It has been such a long process and very stressful and draining. In the process I lost a very good friend and hope someday she will see or hear the truth.
That is about all that has been going on with the Ramsey's, thanks for still checking in on us.
Love and Blessing's
The Ramsey's
Tuesday, September 22, 2009 2:04 PM CDT Please pray for some friends in Katy, Tx: http://www.caringbridge.org/visit/harrisonhughes
Well, it seems that I have not been out here in a very long while. First Nolan is doing fantastic!! He is out of the brace except at school on the playground and we will ditch the brace as a whole in November. The surgery seems to have been a great success. Nolan does not complain about his back hurting unless someone hits him there (his siblings or cousins). He still gets around like he is an eighty year old but one thing at a time. At some point we want to get him back out to Duke to have Dr. Fitch look at his knees, hands, and hips. The surgeon here does not seem to be concerned about checking these out in a timely manner. We just don't want to wait to long to get these things fixed. We have moved photopharesis treatments to every 8 weeks, and that is nice. It's the first time in over six years that we don't have to be at Children's every month or more. Something to celebrate!!!!
Nolan loves school!!! He started the second grade this year. He is also riding the bus (well the little bus), they come to the house every morning and pick him up and then drop him in the afternoon. He feels so big. He is doing great and really catching on to math. Numbers seem to be his thing, like his daddy and big brother. Reading is not coming along so well but he is trying very hard.
We are excited for the fall. Snow is already in our forecast and we are loving it. Nolan wants to be Luigi from Mario Kart for Halloween!! And he is already planning his list for Santa. We love the Fall here!!!
Cooper is QB for his eigth grade football team this year and doing extremly well, who would have thought!! We are enjoying the games. Mackenzie is dancing 8-10 hours a week this year and loving it. We keep a busy schedule, I running around with kids from 2:30 until 8:30 most days. Sam is been really busy this fall also. I am still working at the Dance studio, but have been cut back to only a couple of hours a week. I am looking for something to do while the kids are at school besides work out! LOL Would love to do some visual display work or Product rep. these usually have flexible schedules that would work with my kids activities.
We hope the dreaded court case will be over soon!!! Then we can finally put the whole Spa thing behind us. Pray that it ends in October!
We have finally settled in at a church. We are attending Flatirons community church in Lafayette and love it. It is such a real place without a lot of people judging or setting a lot of rules that Jesus never intended Church to be.
That's about all the news I have for now. Again I will try to keep up the page better than I have for thoes of you who actually still check in on us.
Thanks,
Tha Ramsey's
Sunday, July 5, 2009 9:18 PM CDT Hello and Happy 4th of July a day late!
Nolan is doing fantastic! He started summer school two weeks ago and loves it, he loves riding the bus, he loves getting out of the house for a few hours everyday. He is still in the brace and will be until August 20th. We stay in most days because Nolan gets hot really easy, but he is getting around great. In fact almost too great! The therapist at school says he is trying to run around the play ground and slide.
We go to the Genetic Doctor on thursday for Nolan's yearly visit. Sam wants to talk with them about having his knees, hands, and hips done pretty soon. I know it seems quick after the spine surgery but we just attended an MPS conference here in Denver at the Children's Hospital a few weeks ago and the general concensus is that the knees should be done by the age 6 or 7, because MPS kids tend stop growing around 7 or 8, well Nolan is already 7 so we want to see what we can do.
Summer is flying by, which is a good thing this year since we are not traveling. School starts the 21st of August for Nolan. Cooper is going to his second football camp and then off to church camp at the end of July. Kenzie will attend Dance camp in a couple of weeks so they are keeping busy.
Sam is back to traveling. He left for New York this evening. This is his first trip since Nolan has surgery. He has a couple more trips to the big apple in August, Coop, Kenzie and I may try to go for a couple of days if we can figure the airline tickets out!! Nolan would stay with Aunt Chell for a couple of days. Not sure if we can work it all out but it would be a nice mini trip for the kids.
Court case is coming up in October, can't wait to get that over with. I just want to put the whole experience behind us. Live and learn. (Learn not to do business with crooks)
Well thats about it for now.
Love and Blessings,
Nancy
Tuesday, May 26, 2009 11:33 AM CDT
Hello,
Nolan is doing great today. He is getting around alot better. Not all on his own but he will be soon. We have to watch him every second so he dosen't wonder off by himself. He has been sleeping in his room now for almost a week, of course Sam or I have to sleep in there with him, but we are one step closer. His pain seems to only be in the mornings right after he gets up and if we have had him out. The leg pain seems to be the worse. His skin is awesome, I have never seen it look this good, no rashes and very soft. The brace is hot and we have to keep the house really cool. I don't think we will be outside much this summer. He really is doing better than we anticipated, we are so glad. Thanks for all the prayers, they have meant a lot to us. Now just pray for a smooth summer with no set backs. Nolan will see the surgeon again next Wed, June 3rd.
Grammy returned home on Sunday, on their way home she broke her ankle, she got out of the truck at a stop and it snapped. Ouch! So she is now off her feet for a few weeks. Hope she has a quick recovery, gets lots of rest she deserves it. We will miss her greatly, she was such a big help with running the house, running kids around to activities, cooking, cleaning, helping with Nolan, I don't know how I will manage without her here. At least Nolan is up and around more and he helps move himself from the bed and chairs now.
Nana will be going in for a procedure with her heart on Monday, June 1st. They will be stopping her heart and restarting it and giving her some new drugs in hopes that it will stay in rythem, if it does not work, she will be having open heart surgery. Pray that this new drug will work. I am not sure how we will work things if she has surgery, Nolan still requires a lot of care. When the rains come they just keep coming!!!
This year has been one of our more challenging years, I keep thinking what more could happen, (don't answer that)I know challenges develop character and such but haven't I developed enough? Not to be complaining. We are so greatful for a successful surgery, Sam's job is going well(he has one, that is more than some people right now), Cooper and Kenzie are doing great. Wonderful friends. We have a beautiful home, good food and clothes on our backs, it could be a lot worse! So just taking a little time to count my blessings.
Seriously if anyone wants to visit Colorado this summer, come on, we are here with nothing going on, we would love to have guest.
Well that's it for now.
Love and Blessings
Nancy
Sunday, May 17, 2009 9:33 PM CDT This paper was written by a special friend of ours Kaylin Ronacher, She read it at her school in front of several 100 people in a presentation called This I Believe, just thought I'd share.
Those with Challenges are the Greatest Teachers
By: Kaylin Ronacher
An addiction, a disease, a disability, a loss, these are major pivoting points in a persons life. I’ve seen how disabilities take a toll on people, I’ve seen how hard an addiction is to break, and I’ve seen people suffer from losses. I’ve also seen people strive to overcome their impact. Someone I know is trying to overcome one of these challenges now. Nolan has exceeded his life expectancy by 4 years, it’s a miracle. Somehow, he has outlived other kids with Hurlers Syndrome. Everyday, his family tries to avoid the fear of an unwanted outcome, Nolan’s death. His mom knows that everyday could be her son’s last. The syndrome has little mercy and has killed most children before they have reached the age of 10. He’s 7 as of a few weeks ago. I see him a lot; I see how he grows and how he smiles, how he lights up everyone’s world and teaches them so much. When I first saw him, I was curious to know what was wrong with him. In the beginning, I thought, “Why is that little kid so abnormal? I feel bad for him. ” Little did I know that he’d inspire me to become a better person. I had no idea that he was fighting for his life, and that he wasn’t supposed to be alive.
After a while, I started to analyze how Nolan acted around people, it was incredible; you could see the shift in ones happiness when they were around Nolan. It was as if he was created to make others joyful, even when they were having a bad day. I remember going into his hospital room after he’d completed spine surgery, school had been long and tiring. When I entered the room, I was speechless. Even though it was painful to see him so constricted, he made me happy. His voice was very soft and I remember him saying how he hated crying. I responded with, “Are you crying, Nolan?” Of course he said no, while little streams of water made their way down his cheek.
Lately, I’ve been starting to realize that God sent him to change others, to open up their hearts, to show them to never take people you love for granted. I believe that if people knew Nolan, they’d understand how he makes an impact with everything he does or says. I believe in unconditional love. Nolan has displayed love towards everyone, even those who consider him to be a drain on society. I believe you can be changed by someone with disabilities. I believe disabilities are only setbacks if they are made setbacks. I believe we all have a Nolan in our life, I also believe Nolans are the greatest teachers.
Thanks Kaylin, It meant alot to us. We love you.
Thursday, May 14, 2009 11:57 AM CDT
I am a little delayed getting the updates out, but as they say no news is good news!
Nolan is doing extremley well. He is getting up and around in his wheelchair and walker everyday. We are having less and less pain. We keep him on a low dose pain med all day. He has been to the school twice now and can tolorate about an hour at a time. We took him for two hours one day and ended up with a melted down child. It is taxing for him to be out so we have decided an hour is about all we can do for now. It is taxing on Mommy and Grammy also!!! We are going to try to do a couple of days next week. He really enjoys seeing his friends and teachers and they really get a kick out of seeing him too. He is still having therapy twice a week but will move to out patient therapy in a week. August still seems a long way off but we hope it will pass quickly!!
Grammy is getting to be pretty good at the WII and even came in seventh on Mario Kart the other day. Nolan of course has perfected the game playing. We have watched multiple movies, played Leapster 2, DS, done several puzzels, played with moonsand and much more. Thanks to so many people that have sent entertaining items and money for Nolan to purchase more games, etc. He really appreciates it all and we do too!!! I don't know what we will do when Grammy leaves, she has kept the house running and entertaining Nolan. She is planning to leave Memorial Day, so then it will be up to Sam and I, at least the kids will be out on the 28th and can maybe help me out some.
I wanted to thank Living Faith Church and Karry Gangji for all they have done for us. We are not members of any church at the moment and Living Faith has stepped in and ministered to us on a level that not many churches would. They had a special prayer time for Nolan on Easter Morning the day prior to surgery and they provided meals for our family for a week. Not just a cassarole either, I am talking gourmet type meals. We have only visited their church three times in the last seven months. We have been truly blessed by them.
Also Thanks to my wonderful friends who provided meals for us after the week of Living Faith. Thanks Melissa, Rachel and Stacey. Everyone has been so kind.
We appreciate all the cards, calls, e-mails and prayers. It has been a stressful event and we rejoice that we have such wonderful support.
Love and Blessings,
Nancy
Tuesday, May 5, 2009 11:22 PM CDT
Hi All,
Today is my nephew Hunter's 9th Birthday. Happy Birthday Hunty!!!
I am happy to report that Nolan walked today not only in his walker but walked without it with only support under his elbows. He is very wobbly, but he did it and is very tired this evening. We are working on stretching and walking from the bed to the wheelchair and from the wheelchair to the kitchen to sit at the table. He is doing remarkably well. Tomorrow we go to Children's for Photopharesis, we will also see Dr. Erickson the Ortho surgeon. I feel like Nolan is progessing well, he is still using several pain meds, but less than last week so that is improving also.
My mom went home on Saturday after being here three weeks helping with Nolan, but Sam's mom is still here helping me out. It is still difficult to do all that needs to be done with Nolan on my own. It has been so nice to have the help, we really appreciate having had both Grandma's here. I hope with Nolan's improving skills that my need for help will lessen.
Nolan is sleeping so I think I should catch some Z's.
Love and blessings,
Nancy
Wednesday, April 29, 2009 11:57 PM CDT
Sorry for the delay in updates. Nolan is doing pretty well. He is still not walking and they are concerned that something is wrong with his right leg. We have an appointment in the morning with one of Dr. Erickson's associates because Dr. Erickson is out of town this week, to have it checked out. He won't put much pressure on it and cries when we make him stand on it. The PT came yesterday and she will be back late tomorrow afternoon, she is hoping to get Nolan able to get in and out of bed and into the wheelchair better and maybe even walk to the bathroom. The nurse seems to think he should be doing more at this point and not needing as much pain meds, but he still seems to have a lot of pain. Maybe we will find out something tomorrow and we can get him to be more comfortable.
That's all tonight. I am tired and this is my night to get some sleep so I am going to get it!
Love and Blessings,
Nancy
Friday, April 24, 2009 0:57 AM CDT
Good Evening or Morning, however you want to look at it. I am sitting downstairs with Nolan tonight. He is sleeping well so I will make this short so I can go off to sleep as well.
Nolan woke up this morning with a couple of soars under his brace, we removed the brace for a while today and let his skin breath. He has an appointment tomorrow with the brace people to see if they can get it fitted better so it won't rub. He is still running a slight fever tonight, he did eat a little bit tonight and drank a little juice, we are not having much luck getting him to eat and drink, I think that is why we are having the fevers.
Thats all for tonight.
Keep praying!
Love and Blessings,
Nancy
Wednesday, April 22, 2009 11:34 PM CDT
Good Evening
Today was our first full day at home and boy was it a long day. My house looks like a hospital exploded in here. We are all getting used to the brace and Nolan's limited abilities. He still can not walk or stand without assistance. We have a wheelchair and a walker to help with this. He likes to have Sam help because he feels secure with him because he can just lift him when needed. I can not (my back is killing me)and we struggle more. Sam's Mom is helping me with moving him around and changing his pullups. It has been such a blessing having my Mom and Sam's Mom here to help out, I can just concentrate on Nolan and what needs to be done with him and they do all the rest. I am sure we will get into a routine in a few days. I hope the "grandmas" stay a while, what will I do when they leave and I am on my own!! Yiks.
Michelle's church has been bringing meals this week and what a wonderful outreach to us, we are without a church at the moment and it is such a blessing to have a church who barely knows us step up, and might I add the meals have been fantastic!!! I want them to go on and on. My family will be spoiled. I am not that great of cook and what we have had the last two days has been gourmet. Thank you Living Faith, you are showing God's unconditional love to our family in our time of difficulty and we really appreciate it.
Nolan has been running a fever today, around 100.8, we have to call the docs when it reaches 101. We think he may be dehydrating a little, it took him 24 hours to pee and he has only peed twice since then. Sam is sleeping on the couch tonight and I get to sleep in the bed upstairs, hopefully he will have a good night. Tomorrow night will be me on the couch but Kenzie wants to join me since they do not have school on Friday. So we may have a slumber party.
Keep praying for Nolan and us as we transition into the new phase, I keep repeating it's only four months, right?
Love and Blessings,
Nancy, Sam, Coop, Kenzie, Nolie, Grammy and Nana
Tuesday, April 21, 2009 10:38 PM CDT
We are home!!! Yeah!
Nolan got his brace around lunch time today and we left the hospital around three. Nolan is resting simi- comfortably this evening. He is not used to the brace and it is uncomfortable, I anticipate some long nights ahead of us. We have made a bed for him in our living room and one of us will sleep on the sofa next to him over the next few months. They ask that we have Nolan wear the brace all the time even at night.
I am very tired tonight and will update more later. I need to sleep when he sleeps or I might not get any.
Love and blessings,
Nancy
Monday, April 20, 2009 11:13 PM CDT Well, we did not make it out today. I am here tonight with Nolan on what we hope is our last night in the hospital. The brace did not come in today so we have to wait until tomorrow before we can leave. Nolan did take some more steps today with Sam, he trust him more than anyone else, just because he can pick him up without much effort!
Nolan's blood pressure has been high all day so they are kind of watching that. Have no clue what could be making it high all of a sudden! He is sleeping comfortably right now. He still cries when he has to move, but not as bad as last week, so I think we are making progress.
Cooper was in his school play again tonight, Sam and Mackenzie went to support him. Of course he was awesome!!! I personally think he is the best.
One of the moms from the dance studio where I work was talking with me about Nolan and all his medical issues, She has had many of the same experiences with a boyfriend about 10 years ago, he had three Cord Blood Transplants and she helped him through them all, unforturnatly he died of complications about four years ago, it is rare to find someone that knows in detail the process, hardships, pain, and life after transplant. It was nice to be able to talk with her about it and I think it helped her to, she said she still has not healed from the whole experience. It does take time.
Some day I really am going to write that book, the chapters just continue, Spinal Surgery is the next chapter!!
Well that is about it for tonight. Pray that we will get out tomorrow, I think we are all ready to get home.
Love and Blessings
Nancy
Sunday, April 19, 2009 11:03 PM CDT Hi all,
Nolan had a really good day. I think we are ready to come home. Nolan stood up today, not without some protest, but he did stand and he took some steps all the while crying. But this is progress. The therapist said most kids think they can not walk after this surgery, they can it is just like they kinda forgot how and have to get confident again. He is still taking a lot of pain meds and will probably for a few weeks. Nolan had a visit from his Teacher Ms. Williams and his Para Kate this afternoon and it made his day. He really misses his friends at school.
Nana and Grammy are prepairing for for the little guys arrival, we now have a bed in the living room and a little wheelchair for him to get around in. I dread the ride home, Nolan has only spent about thirty minutes in his wheelchair at a time so tomorrow will be a challenge as we live about 45 minutes from the hospital. He will have to sit up for about an hour or more. Pray for Sam and I as we drive home!!!
I have recently found facebook, I have had a lot of time at the hospital to play on it. If you have a facebook look me up!!!
Well I am turning in for the night, I will report more tomorrow hopefully from home.
Love and Blessings,
Nancy
Saturday, April 18, 2009 1:56 PM CDT Happy Birthday Nolan!!!! 7 years, Wow!!! We are so proud of you and all your 7 years. You're the man. You Rock!!
Nolan is having a pretty good day today, we are waiting on the fam to come up to the hospital to celebrate. We plan to go home on Monday when they get the brace ready. He is kinda scared to move around much. The therapist came in earlier and made him get in the wheelchair and take a little trip around the 6th floor, he did not really like this very much, lots of screaming involved!! He will try it again when everyone gets here. Sam, Coop, Kenzie, Grammy, Nana, Uncle Shawn, Aunt Chell, Hunter, and Chase are on the way. Stacey, Josh and Michael P. are already here. Our nurse Jenn already brought in a great felt coloring board and Tiger. Nolan is having a great birthday here at the Children's Hospital. He had rounds of nurses and doctors coming by yesterday with gifts and well wishes, he is a very popular dude here! Our room looks like a toy store!! He loves them all. We also had a big blow out party last Saturday with all his friends and neighbors, Cooper had his friends over also, for his big 13th(which was Tuesday). I think we ended up with about 50 people in our yard and house. Great fun and a great way to celebrate before the big surgery. We have tried to make this process as painless as possible. I have to go help color now so maybe more later.
Love and Blessings
Nancy
Friday, April 17, 2009 0:06 AM CDT Too tired for long updat. Nolan had a bad night last night and this morning, neither one of us got any sleep. Sam is there tonight, He is resting comfortably, they got a good med routine down and hopefully tonight will go better.
Nolan got another transfusion this afternoon. ( krit was 22) I am sure that helped make him feel alot better.
I will write more tomorrow.
Keep praying for him, He still hurts alot!!!
Nancy
Thursday, April 16, 2009 1:02 AM CDT
Nolan is having a hard night tonight. He is on blow-by oxygen(he can't stay out of the 80's) and he is just not that comfortable. He has a lot of swelling in his arms and legs tonight, they are running extra fluid right now to try and make him pee, he hasn't gone since 11am and they checked his bladder and there really isn't that much in there, if he doesn't start getting rid of it my morning they are calling his cardiologist in.
He had a fairly good day considering he started out feeling really bad and throwing up a few times. He sat in a wheel chair for about ten minutes and rode down the hall to see the play room, he was really pooped when we got back to his bed. We had several visitors this afternoon and evening and his mood got worse as the evening wore on. He did eat a little bit today, chicken noodle soup and mashed potato, not a significant amount but enough.
The doctors are now talking about this new kind of brace that we may get instead of a cast. It would be great if it all works out, we may even be ready to go home by Monday if all goes well.
I am heading off to bed as soon as the nurse gives the next round of pain meds, so I will give more info. tomorrow.
Thanks for checking in and the prayers.
Love and Blessings
Nancy
Tuesday, April 14, 2009 11:20 PM CDT Hey all,
Nolan is doing pretty good today considering they nearly cut him in half yesterday. He is fairly grummpy but with good reason. They moved him to a room late this afternoon around 4pm. He did well with the move but he was really tired after. Even though he never left the bed! They had him sit up twice today and that really did it for him. I have never heard such screaming!!! Poor baby. He is on a lot of pain meds and still not feeling very good. They are trying to move to all oral meds but I am not sure they can control the pain yet, he still has a morphine pump. He hardly moves or talks, this is the most still I have ever seen him and the quietest. He threw up a couple of times today but that was expected, he was hungry this morning and the nurse said to let him have what he wanted, so we did and he ordered pancakes and hashbrowns, not a good idea twelve hours after surgery!! Yikes! So lunch and dinner consisted of plain mashed potatoes and very little of them!
Sam is with him tonight and I will return in the morning. Today was Cooper's 13th birthday so I came home to go to dinner with him complements of Uncle Shawn and Aunt Chell!! Thanks guys. Grammy and Grandpa and Nana too. Can't believe Coop is 13. Nolan will be 7 on Saturday! Boy time flys.
Thanks for all the prayers keep them coming, we have a very long recovery ahead of us. They are waivering on the upper body cast, I just want what is best for Nolan. I know this is so hard for him but it was so wonderful to see his straight back today I almost cried! He is not in the mood for much of anything but maybe in a few days we will see the old Nolie back.
Love and Blessings
Nancy
Monday, April 13, 2009 11:12 PM CDT Nolan never ceases to amaze me. The surgery went great! He went in around 11am and they were finished around 5pm. It went quickly and smoothly. The docs were very pleased with the outcome and think he is doing great. They only had to give him one pint of blood and may have to do one more tomorrow, but for this type of surgery that is awesome. He is in PICU tonight and maybe for a little while tomorrow but they did not have to leave the breathing tube in so I think he will be moved to a room on the sixth floor tomorrow. Sam and I both are here tonight. Sam is in PICU with Nolan and I am in a sleeping suite down the hall. Nolan was somewhat alert a little while ago when I was in there, he drifts in and out of sleep, he seems comfortable right now, he has morphine on board so who wouldn't be!! Earlier he was very grouchy, and complaining that his back hurt, but after that got the pain down his mood improved a lot. They also said Nolan does not have to have the dreaded spica cast. They will be doing an upper body cast that will leave his legs free. This will be so much better!!! What a praise. I am sure the recovery will go much smoother. I will have more info tomorrow after we see the docs in the morning. Thanks for all the prayers they must be working!!!
Love and Blessings
Nancy
Sunday, April 12, 2009 11:13 PM CDT Happy Easter; He is risen!!
We just wanted to keep everyone updated on what is going on with Nolan and our family. Tomorrow morning Nolan will check into the Denver Childrens Hospital to undergo surgery on his spine. It will be to correct his kyphosis as the curvature has become more pronounced as he has grown. The surgery will take about 6 hours and he will have to be in a body cast for about 4 months. Can you imagine taking a 6 year old, very active little boy and putting him in a cast! We were trying to hold off for several more years but due to the curvature and his growth we really need to do it now. Please pray for Nolan and his surgery tomorrow and the entire family for the next several months as we all go through this. As many of you know; it IS the entire family that goes through these types of procedures.
God bless and we will make sure to keep the website updated to let everyone know how he is doing.
Sam, Nancy, Cooper, Mackenzie, Nolan, Lucy and Beau.
Wednesday, February 11, 2009 5:24 PM CST New update, I know you are shocked. I really do think about updating all the time, I just never get around to actually doing it.
Well, I said at the end of our Christmas letter that there would be something coming on the medical front for Nolan. We have scheduled the long awaited Spinal Fusion and Vertabraectomy Surgery for April 13th. Nolan will be inpatient for at least 7 days maybe more depending on how he does. This will be our second birthday in 7 years to spend in the Hospital. Not to bad I guess. We are going to have a family/friends party for Nolan and Cooper on Saturday the 11th at the house. (Cooper's 13th birthday is the 14th and Nolan's 7th is the 18th) Nolan would like to have the Chick-fil-a Cow come to his party but I am not sure we can get him there. We would love to have all the family come if possible, we won't be traveling this summer so if we see anyone you will have to come to us. Nolan will be in a body cast for four months, so pretty much all of the summer. We would love to have guest even with Nolan laid up it would help pass the time and aleve some of the boredome. Hopefully when school starts in August we will be able to go back. He will have extensive physical therapy after the cast comes off.
We hope to have the Spa case wrapped up before surgery. I am ready to be done with Utopia and never look back. I have never had to deal with such dishonst people before. It is scary.
The kids are good. Mackenzie is busy with ballet and Cooper is busy with his school musical. Everything else is going ok for now. We have lots of juggling to do before April but I am sure I will get it all worked out!!!
Love and Blessings,
Sam, Nancy, Cooper, Mackenzie and Nolan
Tuesday, December 23, 2008 2:25 PM CST Merry Christmas from the Ramsey’s
2008 has had its ups and downs along the way, but we are here just days away from celebrating another Christmas and flipping the calendar one more time to 2009. We hope this year has been good to you. We are blessed to all be healthy and employed, something to be very thankful for in this time.
Lots of changes in the Ramsey’s world and we are still trying to find our way. We have left Mountain View (or in Nolan’s words Mountain Dew!) Church to find a new home for our family, we want to find the place the Lord wants us to serve. Sam misses leading worship but I know the Lord has something wonderful waiting for us.
Cooper has become a young man overnight, I blinked and he is almost taller than me (I know this is not saying much), but he really has grown so much this year physically and in maturity. I can not believe he is in the 7th grade already. He still plays club soccer and is working on his second black belt. Cooper is a wonderful singer (he takes after his dad) and is very popular with the girls. He has also been invited to attend the Presidential inauguration in January with the Jr. National Young Leaders. We are very proud of him.
Mackenzie is our star dancer, she has a full schedule of nine hours a week at the studio and would do more if we would let her. She has found her calling! She is growing into such a beautiful young lady. Last night she performed the Waltz of the Flowers from the Nutcracker in the studio’s annual Christmas ballet “Searching for Christmas” she was stunning! Kenzie also enjoys school choir, drama club and newspaper, she has discovered she is quite the writer!! Fifth grade has been a growing year in many ways. She is such a blessing to us.
Nolan is doing very well himself. He is in 1st grade and loving it! He has a full time para (helper) in class and goes to speech, occupational therapy, math and reading outside the classroom. He loves to have play dates with some of his classmates that live in the neighborhood and all the kids are so good to him. Physically things are good for the most part, he is having some mobility issues that we are trying to address and make the best decisions for him. He still goes to clinic twice a month at the hospital, but takes it all in stride! He is an amazing kid.
Nancy has a couple of new endeavors, she works part-time at the dance studio (to help pay for all those classes) and she is a Silpada Designs Jewelry Representative, so if you need any jewelry give her a call!!!! Sam is still working away at ICAT and trying to find time to do all those little jobs around the house!!!
As always we would love to hear from you or see you, you are always welcome here! Have a Merry Christmas and a Blessed New Year.
Love and Blessings,
Sam, Nancy, Cooper, Mackenzie, Nolan, Lucy and (our newest addition) Beau
www.samdramsey@comcast.net www.mysilpada.com/nancy.ramsey
P.S. I hope to update more often this coming year, we will have more to report I think in the coming months. Please pray for us as we make a major decision for Nolan in the next couple of weeks.
Monday, July 7, 2008 9:49 AM CDT Hi all,
Summer has been a whirlwind of activity. We spent two weeks driving around in Texas visiting family, doing our depositions for the spa and vacationing with the Stayers & Heilheckers (Sam's Sister and Brother) in Galvaston. It was great, but we were glad to get home and get back to our house and dogs.
Nolan was glad to get back to clinic,except for the needle sticks. He seems to be having such a hard time with accessing his port lately. Everything else about clinic is great, but he puts up a fight now when they try to access. Ileen and Mary his nurses in Blood Center have created some games to help him get through it. He also has developed an avertion to Doctors. Dr. Ed and Ralph are not on his good list right now, we are not sure why, he used to love them both. He still loves his nurses and all the treats he gets while at clinc. Maybe he is just tired of it all, I know I am somedays. Five years is a long time for continued clinic visits. We have not been able to go back to Duke in two years, the cost of the trip is just too much right now. So we are setting up some new doctors here. Yeah just what I wanted more doctor visits!! lol
School starts here August 18th, so summer is on the downhill slide, we have about five weeks left, it seems to have zipped by this year. Nolan will start 1st grade! WOW! I can't believe it. He is nervous but excited I think.
I have started something new. I am now selling Silpada Jewelry. It is great sterling silver jewelry. The parties are great no formal presentations and everyone just loves the jewelry, it sells it's self. It has been fun and not too stressful so far. I love it. If anyone wants to see the jewelry or have a party just let me know!!! The Spa thing has really taken a toll on me and I needed something lighter.
Speaking of the spa, we will go to court in october, I don't know how it will go but I am trying to let God have it all, I have never dealt with truly dishonst people before and it does not feel good I pray that the court system will work.
The weather here has been great this summer, not too hot and not too cool upper 80's most days, so if you are looking for a great place to visit we are here and available I have two guest rooms ready for use!!! We are close to the mountians! 20 minute drive! We would love to have anyone willing to make the trip! Casa Ramsey is open year round. Ski season will be coming soon! I am booked for July 26- Aug 1 we have a mission team coming to work in the community and I will house 14 teenage girls!! are we crazy or what! Cooper should enjoy it! Actually he will be going to another house for that week with all boys.
I do have a prayer request for a young boy named Josh from our church will be going in for surgery on July 16th. He has leukemia, it was in remission but just found out this week that it is back. Please pray for his family. Josh is 12 years old and very scared. He will be at Children's here in Denver. Nolan and I will be there for clinic the day he has surgery and plan to go be with his family for a while that day.
Anyway that is about it for now. I don't know if anyone reads this anymore but I will still update when I can.
Love and Blessings,
Nancy, Sam, Nolan, Cooper and Boo
Tuesday, April 22, 2008 5:46 PM CDT Wanted to make a quick post about the little girl I requested prayer for, Laiken Kenwood. I just got an update and her parents have decided it is time to let her go to be with Jesus. So this evening they will be spending their last moments with thier daughter here on earth. Please keep them all in your prayers tonight. www.caringbridge.org/visit/laikenkenwood
Also my mom said that Richard Timmons has gone home, still many complications but he is home. Praise!!
Saturday, April 19, 2008 9:58 AM CDT
Happy Birthday Nolie!!! (Well Yesterday)
Nolan is 6!!!
We had a big cowboy/horse party in the backyard with his friend from school Dylan who has the same birthday. There were about 17 kids, 6 teenagers, 8 adults and one clown! The boys had a fabulous time. Every year I say I won't do that again but when the time rolls around I cave and end up with kids hanging from the rafters. This was the first year that the parents just dropped and left the kids. It was a little crazy. Nolan is happily playing with all his new stash this morning. Thank you to everyone who came. Nolan is so blessed to have so many friends who love him so much.
Nolan's Special Ed teacher called this week and told me about some of the kids making fun of him at school. Nolan had already told me most of it, so I was not surprised. He seems to have developed a good come back to them, he told the kids that if they did not stop they would have to go to the principal. I guess he told them!!
Cooper's birthday was monday, Sam had just gotten home from Brazil so we had a family celebration and will probably go play laser tag tonight for his birthday. April is always complicated with two birthdays back to back and the Mad Fundraiser usually within the same week or week after. This year the fundraiser is next Thursday. Then May gears us up for the end of school and all that goes with that.
Nolan is scheduled for Dental surgery on May 1st. Finally he will get his teeth cleaned, cavities filled and xrays done and whatever else they decide needs to be done at this time. He may lose a couple more teeth. The dentist said he will try to save what he can. Last time they said that Nolan came out of surgery missing 10 teeth.
The GVHD is flared pretty good today, and we are still having some tummy issues. We see Dr. Ralph on Wed. so maybe we will decide what we can do for him.
I have an urgent prayer request. A young girl named Laiken Kenwood is very sick this morning, she is 12 years old and going through her second Bone Marrow Transplant (BMT) She is in ICU and I just heard they have called for the family to come quickly if they wanted to spend some time with her. Please pray for her and her family Stacey and Jim. www.caringbridge.org/visit/laikenkenwood
Thank you all for praying for our friend Richard Timmons, I have heard that he is doing somewhat better and has been moved from the ICU. Praise the Lord for hearing our prayers. Continue to remember his family I am sure the road is still long.
That's it for now!!
Love and Blessings
Sam, Nancy, Cooper, Boo and Nolie
Saturday, April 19, 2008 9:58 AM CDT Happy Birthday Nolie!!! (Well Yesterday)
Nolan is 6!!!
We had a big cowboy/horse party in the backyard with his friend from school Dylan who has the same birthday. There were about 17 kids, 6 teenagers, 8 adults and one clown! The boys had a fabulous time. Every year I say I won't do that again but when the time rolls around I cave and end up with kids hanging from the rafters. This was the first year that the parents just dropped and left the kids. It was a little crazy. Nolan is happily playing with all his new stash this morning. Thank you to everyone who came. Nolan is so blessed to have so many friends who love him so much.
Nolan's Special Ed teacher called this week and told me about some of the kids making fun of him at school. Nolan had already told me most of it, so I was not surprised. He seems to have developed a good come back to them, he told the kids that if they did not stop they would have to go to the principal. I guess he told them!!
Cooper's birthday was monday, Sam had just gotten home from Brazil so we had a family celebration and will probably go play laser tag tonight for his birthday. April is always complicated with two birthdays back to back and the Mad Fundraiser usually within the same week or week after. This year the fundraiser is next Thursday. Then May gears us up for the end of school and all that goes with that.
Nolan is scheduled for Dental surgery on May 1st. Finally he will get his teeth cleaned, cavities filled and xrays done and whatever else they decide needs to be done at this time. He may lose a couple more teeth. The dentist said he will try to save what he can. Last time they said that Nolan came out of surgery missing 10 teeth.
The GVHD is flared pretty good today, and we are still having some tummy issues. We see Dr. Ralph on Wed. so maybe we will decide what we can do for him.
I have an urgent prayer request. A young girl named Laiken Kenwood is very sick this morning, she is 12 years old and going through her second Bone Marrow Transplant (BMT) She is in ICU and I just heard they have called for the family to come quickly if they wanted to spend some time with her. Please pray for her and her family Stacey and Jim. www.caringbridge.org/visit/laikenkenwood
Thank you all for praying for our friend Richard Timmons, I have heard that he is doing somewhat better and has been moved from the ICU. Praise the Lord for hearing our prayers. Continue to remember his family I am sure the road is still long.
That's it for now!!
Love and Blessings
Sam, Nancy, Cooper, Boo and Nolie
Thursday, April 3, 2008 9:47 PM CDT
I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16
Well in about 15 hours Nolan will be exactly five years post transplant( 4/4/03 @ 1pm)!!!! Wow what an amazing five years we've had. Plenty of ups and downs. Through it all God's amazing love pours out of Nolan and touches all the lives he comes in contact with. Don't get me wrong he has his typical five year old moments, but I have never known a child to endure all he has and still maintain a happy, joyfull personality. He loves to read the Bible now or at least for us to read to him. He knows God loves him and will tell others freely about God's love and how Jesus died on the cross. We are so blessed to have him with us. I treasure everyday that he is here. The "Miricle boy" lives!!! How many nights did we sit by his bed in PICU and pray for this day. Transplant day, what a scary day for us, Nolan's first Code, I learned alot that day. I learned it did not matter what I could do, but what God could do, it was all in his hands from that point on. How appropreate for today the verse in my calander for this week is "To every thing there is a season, and a time to every purpose under the heaven." Ecclesiastes 3:1 Nolan's journey is far from over and I know his pain is daily, but his attitude is from the Lord! He is a wonderful loving child whom I consider my Hero! As I watch him sleep tonight I thank the Lord for this precious life I have been given to watch care over.
Here's the medical update. Nolan got his new port a couple of weeks ago and it seems to be working well. We had a rocky start with it in Photo last week, but after Dr. Ed came in and pushed it in further things got to cooking!!! Nolan is still having problems with his stomach, He cries nightly again, almost like when he first came home from transplant and he is still having diarrhea (4 weeks now) The docs have tested it for everything under the sun and nothing. They think maybe they crashed his gut and we are going to try flagel(sp) for two weeksto reset his gut. Dr. Ralph does want us to come in Monday and talk about scoping for GVHD of the gut. Pray that it is not this, it is much harder to control and treat. Nolan has not had gut GVHD in about three and a half years. He has mainly had GVHD of the skin, which is very flared right now, his legs and tummy. It never ends!!! Keep up the prayers!
The week after Nolan got out of the hospital Mackenzie broke her elbow when she fell off of a trampoline. We just got the cast off this week. He arm is very dry but much better. We have to go back to the ortho in two weeks to make sure she has full range of motion. Boy we just can't chatch a break!!! I know the saying the Lord won't give you more than you can handle but I think he has more faith in me than I have in myself.
Sam is traveling this week, but will be home tomorrow than gone again on Sunday until the 14th. He was off so much while Nolan has been sick that he is playing catch up now.
Cooper's Birthday is in 10 days on the 14th. He will be 12 and every bit the tween. We have caved and he will be getting a cell phone. Shhh, He dosen't know yet! It will make my life a little easier to keep up with him. Nolan's birthday will follow four days later on the 18th. We may have a combined party with a little friend from school who has the same birthday. It is nice that he has so many friends at school, of course there are the few ignorant ones. He is currently being called diaper boy by a few of the boys at school and one little boy told him he would never come to his birthday party, I witnessed this occurance and wanted to smack the little boy, but I had to remind myself the child is only a five year old and his ignorance is probably a result of the parent! I left with a few tears that day. I know it will get harder as we go and I pray that Nolan will still have the rose colored glassed he seems to wear.
Well the spa is still in litigation and will be for some time. We have a court date of October. I am still sad and confused to how people can be so cruel but I am sure there is a reason. I have no bitterness for the prior owners only prayers that someday they will come to a saving knowledge of Christ and know the things they have done as wrong. I have closed the door and moved on. This week I will be having an open house for my new business as a Silpada Designs rep. I never really thought I would do something like this but I love the jewelry and the company. If you are around on Saturday drop by and take a look at the jewelry!! It's fantastic! Times are 10-12 and 3-5pm I have to run at 5, Mackenzie is singing in a talant show with Lily her friend from school.
Well that's about it for now. Don't forget to hug your kids!!
Continue praying for some very close friends of ours. Richard Timmons is in ICU in Plano, Tx, they do not expect him to live. He is having complications from liver failure and is having brain bleeds. Richard is in his early 40's, married to Yvonne and they have two daughters 13 & 10. Richard's parents Robert and Grace were like second parents to me as I was growing up. Please lift them all up today for peace and comfort. Thank you.
Love and Blessings
Nancy, Sam, Coop, Boo and Nolie
Friday, February 29, 2008 10:29 AM MNT Good morning,
I have a special request this morning. Some very close friends of ours need prayer. Richard Timmons is in ICU in Plano, Tx, they do not expect him to live. He is having complications from liver failure and is having brain bleeds. Richard is in his early 40's, married to Yvonne and they have two daughters 13 & 10. Richard's parents Robert and Grace were like second parents to me as I was growing up. Please lift them all up today for peace and comfort. Thank you.
Nolan is suppose to get out of here today. We are still waiting for word from the docs. Surgery is scheduled for Tuesday afternoon for the port to be taken out and a pic line to be placed until they can put in a new port. The dental people can not get us on the schedule so that one will wait. They really just want to old port out because it keeps getting infections. Dr. Ball said this morning that he thought this infection was worse then the two prior because we had such an issue with Nolan's heartrate and BP. Nolan is feeling much better, in fact I think he is probably driving all the nurses crazy as well as me!!! They all think he is so cute!!!! He is cute but after he has been trapped in isolation for six days his cuteness wears a little thin. Photopharesis will be on hold until the new port is in place. Thanks for all the prayers and well wishes this week, we really appreciate them. Thanks again to Stacey and all her help with Coop and Kenzie this week, we couldn't have done it without you.
Love and Blessings,
Nancy and Nolan
Monday, February 25, 2008 11:00 AM Hey all,
Nolan is inpatient with a line infection. This is the second one since Christmas, so in the last two months we have had three line infections. We have only been off the antibiotics for about two weeks. We will be pulling this line after we have dental surgery. They want to get that out of the way before we replace the line. We have been sick so much lately I feel like we did when we first got home from transplant. Photopharesis is going well and Nolan's skin is looking better.
I just heard something from one of the doc's, it looks like we may be here all week, but at least we would get the dental stuff done and the port replaced. It has been awhile since we have had to stay in patient for over a week. I think we might go a little crazy!!! Nolan has watched all the movies they have on demand at least once and some twice and we are only on our second day. Aunt Chell and co-worker Elizabeth came by for lunch today. Thanks Aunt Chell for the cool Buzz balloon and colorbook and crayons. We love you!!! Thanks Stacey for helping out with Cooper and Kenzie, we really appreciate it.
I will try to keep everyone up to date as I think we will be here for a while.
Love and Blessings
Nancy
Thursday, January 17, 2008 2:08 AM CST Well, I really have been laying down on the job!!! Truely sorry for the gap in information. School has been great for Nolan. He loves it, can't believe we are halfway thru the year. As the saying goes no news is good news. Well for the most part.
On December 21st Nolan spiked a high fever and we discovered he had an infection in his lines again, so we anticipated having to spend Christmas in the Hospital, but we had a very cool doctor that was on call that week(all the primaries were on holiday already!)she decided that I could run all the meds at home and after two long days at clinic and the ER we were sent home with IV meds for 14 days, we did have to go back on christmas eve but only for labs. Nolan is such a trooper. I called Dr. Moss our Christmas Angel, she truly understands the lives of these kids.(she knew Emma from Duke and we knew some of the same people from there)
Christmas was great, we spent the day just our family in our PJ's watching movies all day, I think we watched 6 movies total and played two games, we also had our traditional Christmas dinner of Pizza!!!
School is back in session and we are back to the normal routines. Nolan goes for Photopharesis two times a week every other week and it actually seems to be working, his skin has been clear for the last week or so. We have a few extra appointments this month, like dental clinic and eye clinic so we are making the rounds at the new hospital. All in all Nolan is doing really well. His port has it's moments and he usually has to have both lumuns accessed each time we go so that means at least two sticks, but he takes it all in stride and has a smile by the time we leave. I don't know that I would be so accepting.
Cooper and Kenzie are good, growing up to fast. Cooper our mini teen is caring alot more about his apperance these days, must mean there is a girl somewhere!!! Mackenzie is ever so beautiful as she grows, I sit in awe at the beauty she has become inside and out.
Sam is busy with work and the church. We always think things will slow down but as of yet they have not. What can we say!
We had to close the spa in November, the prior owner really put one over on us. We have to kick ourselves for ever getting into that. It all seemed to good to be true and it was. So due to her prior debts we had to shut down. It is all in litigation at this point. I am still licking my wounds and can not even think about doing it again ever, Sam is already planning for the next venture, I am sure at some point I will be healed and recovered and then I too will be ready to move on to the next venture. God has taught us a multitude of lessons. I know something good will come from it someday.
Please keep us in your prayers
Love and Blessings
Nancy
Thursday, August 9, 2007 11:45 PM CDT Hello,
Summer is almost gone and we have been crazy all summer. We have been at clinic every Monday and Wednesday almost every week having photopharesis. Nolan's GVH flares if we do not keep the steroids on everyday, when we go back to every other day he flares up. Nolan is still having problems with potty training, after we went back to clinic every week he just can't seem to get going on the potty. So we are fulltime in a pullup and rarely make it to the potty. Soooo I am not sure how things will go at school. School starts in a week. I am very nervous about this and think Nolan is also, he told me today he wants to go to school at home, he does not want to go to school anymore. We hope to start going to clinic every other week soon. Nolan has had to have blood transfusions to be able to keep having the treatments, they are trying another drug called "Apo" to help him make more blood instead of the transfusions, but it has not started working yet. It is all overwhelming sometimes. I can't believe we are still having to go to clinic so much. It is almost like when we first came home from transplant. We are so thankful for all the progress he has made and it really is a small price to pay I guess to go to the clinic each week to help him. It could be worse. At least we have a hope of a future. He is so brave to have a large (really large) needle stuck in his port twice a week, he hardly cries anymore. He has gotten into the prizes, we come home with more stuff than anybody we know. We have more games, animals,toys than we know what to do with. He now ask for them. We leave with Candyland, Chutes and ladders, candy, stuffed animals, rubber bugs and the list goes on. He really has them rapped around his little finger. He acts like he owns the place. We know so many people in the hosptial I often get asked if I work there by other patients, thats pretty sad. Everyone knows Nolan! He asked the other day if he could go back to the playroom on the 5th floor, He said he liked being inpatient. We really got to get out more often!
Tonight Nolan participated in the Children's Miracle Network Treatday at Dairy Queen. Nolan was an ambassador for the Hospital and presented a plaque to the manager at our local DQ. He had a great time. All proceeds from Blizzards went to the Children's Miracle Network for Children's Hospital. It was great fun and we thank everyone who had a Blizzard or in Nolan speak a "Lizzard" today!
Nolan will also be an ambassador for the hosptial next week at their annual golf tournament for the Blood donor Center. We will go to the dinner and speak about Nolan and the hospital. Nolan's face will be on a golf ball, how exciting! We really have had some great opportunities with Nolan over the years and we love to do things that will bring support for the hospital that has been so wonderful to us. He is our little miracle kid!
Cooper starts school next Thursday, Middle School, I can't believe he will be in the 6th grade. He has had a very busy summer preparing for his Black belt test that was to be saturday, but unfortunatley we think he may have broken his toe today and will not be able to test. Three years of hard work and now it may all have to wait another six months. He is very disappointed. We will see tomorrow how the toe is, but it does not look promising. He also just started practice for Soccer on Tuesday and may not be able to play this season. Send a pray up for him, it will be hard if he has to wait to test.
Kenzie will start school a week from Monday, the day before Nolan. She will be in the 4th grade. Excited to be the oldest Ramsey this year, not being known as Cooper's sister. Dance will start on that day also. She is excited to be in Rad 3, Lyrical, and Jazz. She is quite the accomplished dancer.
Sam is working hard, we hardly see him right now. Things are very busy at ICAT. We hope it slows down soon. We are also very busy with the Spa. Things are slow right now but we hope it picks up soon. We have had a few glitches but hope to have those resolved soon also. We really like having our own business and want to expand in the near furture. Our grand opening will be Sept 14th, if anyone is around for that!!!!
Anyway I will try to update on Nolan's first day of school and post some new pics.
I will try to post some tonight of the DQ visit.
Thanks for checking in on us, not sure how many people really check anymore, but it is nice just to write sometimes.
Love and Blessings
Nancy, Nolan, Cooper, Kenzie
(Sam's in Atlanta)
Friday, June 22, 2007 9:55 AM CDT Hello,
Well we have a little bit going on since Nolan's surgery, sorry for the lack of updates, didn't really have the chance to do any.
Nolan did great through the surgery and he now has a double lumun medi port. We did find out that the prior port was not made for the photopharesis thus why it only worked for twelve treatments and then balled up. They had ordered the wrong port a year and half ago. We do now have the right kind and hopefully it will work the way they want it to.....unless we have to pull the port. One week after the surgery Nolan started spiking a fever of 105. The cultures grew some sort of staf infection, they think in the lines. So we sent all last week in the hospital at Children's. We came home still acessed and I am running Vanc every 8 hours. We have not had home IV's in two years, funny how it all comes back. Sam and I are again pros at running the intermate pump's. Tonight will be his last dose, so in the morning I will pull the needles and then we wait to see if the fever's come back. If they do that means the infection is in the port and we will have to take the new port out, place a pic line and wait til the infection is completely gone before we put another line in so we can continue with the photopharesis. We are scheduled to start back with photopharesis on Monday if we don't have a fever. We have now been off from our regular photopharesis treatment schedule for five weeks. The GVHD flared pretty good over the last couple of weeks so I am ready to start zapping it again. Of course Nolan has been wonderful with all that has been going on, he is very protective of the port site. While we were on the 5th floor last week, it was like a reunion, all the old nurses came to see Nolan and were so impressed with how big he is and how good he looks. It had been almost two years since most of them had seen Nolan. I am always so impressed with the staff of Children's hospital, they are wonderful caring people and we love them all, they are truly our extended family. We had a steady steam of visitors from around the hospital when people learned that we were inpatiant, it was such a nice feeling. Of course Stacey was with us much of the time and my cousin Jimmy and my Mom from Texas were here visiting. I am sure they had a nice vacation at the Children's hospital. It was surly a God thing, because Mom stayed with the kids while I was at the hospital each day and Jimmy came with me to help out. Sam spent his nights there so I could go home a see Coop and Boo, He is such a great husband and daddy, he even spent his Birthday at the hospital with Nolan. We hope that things will get back to normal or our normal soon.
We have also been busy with the Spa, it has been a little overwhelming. The prior owner had kinda left things in a bit of a mess, broken equipment, run down facilities, all the supplies were depleted, so we have been playing catch up and trying to make the Spa what it once was and even better. I have been down to Houston about every two or three weeks and we all are going the week of the 4th, if all goes well with Nolan. Again if you get the chance stop by to see us there. www.utopiaspa.com Utopia Day Spa & Boutique 12155 Jones Rd. Suite 100, Houston, TX 77070
281-890-4772.
Well that is all for now, keep us in your prayers!!!
Love and Blessings
Sam, Nancy, Cooper, Mackenzie and Nolan
Thursday, May 31, 2007 2:53 PM CDT Things are really moving along. School will end for Nolan tomorrow. Cooper and Mackenzie have one more week. Nolan's treatment is on hold for the moment, his port is not working anymore, so tomorrow at 5pm Nolan will have surgery to get a new double lumun port, this should be better than the single, because now they can alternate the ports and we will start going every other week instead of every week. We will still have to go twice in a week. This should help perserve the port, the needle they have to use is so big that is just tears up the port, we did think about putting a broviac line back in, but with Nolan being so active we voted against that idea, if this port does not work we will have to go the route of the line. We should start to see some improvement in the next six weeks or so. the progress will be slower now I think because we will not be getting the treatment as often.
We are now owners of the Utopia Day Spa & Boutique in Houston!!!! It has been a very busy and stressful two weeks of ownership, but I think it will be great once we get orianted. I have another trip down there coming in about two weeks. I am starting to rack up the miles!!! I am also getting my Whatabuger fix!!!
This summer will be busy, with Nolan's treatments, flying to Houston and Summer camps and such!!! We have no vacations planned, the Spa is the vacation this year!!!!
I feel like my head is spinning and I can't slow down. I look forward to the day when I can breath again.
Thats all for now, I will try to update after surgery tomorrow!!
Love and Blessings
Nancy, Sam, Coop, Boo and Nolan
Monday, April 30, 2007 8:45 PM CDT Hi all,
Sorry for the lag in information. Since the last update we have celebrated Nolan's 5th birthday. Five amazing years!!! We had all his school friends and a few others over for some jumpy castle fun and a clown performing magic and making balloon animals!!!! What more could a five year old ask for. It was a great party! Pastor David was the awesome clown!!! Nolan thought this was great!!!
Photopharesis is under way and taking up much of our time. Nolan is tolerating the treatment well. During the treatment his bp drops quite low and the first time this occurred I was a little unnerved. He turned sheet white and started screaming , was very sticky, kept saying he was going to be sick and his bp was 50/40. He finally went to sleep (or passed out so to speak). He sleeps until the process if almost over. This week the nurse has been giving him extra IV fluid to help with the reaction. It has been alot better. Nolan loves all his new nurses in the new clinic, the only part he does not love is the accessing his port with the 16 gage(sp) needle then having to lay perfectly still for about 4 hrs. His port site is holding up well considering being accessed twice a week. There has been some talk of a broviac(sp) line again. we will be going as we have been until sometime in August. We still have regular clinic once a month, it is added on top of one of our photopharesis days, makes for a long day. We go about 8:30 and return home around 7pm. Nolan has been a good sport, of course somedays are better than others. On Nolan's birthday last week the nurses had the room all decorated with balloons and streamers and a cake with presents, Nolan was so excited, they are so good to him. On that same day the access site did not close and Nolan started bleeding on the way home, I had to stop on the side of the road and try to stop the bleeding, it was kinda scarey, His shirt was soaked and so was the car. I had to call in to the clinic for help on how to stop the bleeding. It took a while but he was fine and went home and slept for a while. Needless to say we don't leave now until the site is for sure closed up!!!!
Well it looks like we will be spa owners in about two weeks!!! Our spa is in Houston and called Utopia Day Spa and Boutique. www.utopiaspa.com check it out and come see us if you are in the Houston area. I will be in Houston May 9th - the 16th. It is all very exciting. This has been a dream of mine for some years. I had originally wanted to pursue this kind of business back in Katy, but never got up the nerve to pursue it seriously. Now my dream is about to become a reality.
Thats all I have for tonight.
Love and Blessings
Nancy, Sam, Cooper, Boo and Nolan
Thursday, April 5, 2007 7:58 PM CDT Yesterday was Nolan's 4 year post transplant birthday. Reflecting this week on the last four years has brought back many memories, some good and some not so good. We are delighted with the progress in Nolan's life, how could we ask for more! He is a joy to all who meet him and to our family. We treasure each moment with him and look forward to the days ahead with great hope. We cry for all our wonderful friends who have lost their little heros and we rejoice with the ones who continue the fight.
Nolan will be starting the long and time consuming procedure on Monday called Photopharesis (sp). He will spend every Monday and Wed. morning hooked up to an IV, once a month we will also spend a Friday at clinic getting our regular IV's. This time will be a little stressful trying to juggle all the items that need to be coordinated with all the kids activities, school and hospital visits. Please keep us in your prayers. Pray that this procedure will cure the Graft Vs. Host that Nolan has had for four years. This would be a huge thing if it works!!!
Sam and I just got home today from a business/fun trip to Beaver Creek, we got to spend about three days away just eating, sking and relaxing, it was wonderful. We had to do a little entertaining with clients while we were there too but it was fun. Thanks Stacey for keeping all the kids!! We really enjoyed out time away.
The week before our family spent time in Houston and Galveston, Tx with our friends the Ronachers. Again mixing a little business with pleasure. It was a great spring break It was Nolan's first trip to the beach, he loved it. He would run out to the water and scream. We had a hard time keeping him out of the water.
We are glad to be home tonight and plan to have a great Easter on Sunday.
Love and Blessings,
Nancy, Sam, Cooper, Kenzie and Nolan
Monday, March 5, 2007 10:43 AM CST This article was in our local paper last week.
2/28/2007
Nolan Ramsey was diagnosed with Hurler syndrome in January 2003. He now lives in Erie with his parents, Sam and Nancy Ramsey. Colorado Hometown Newspapers/Leslie Wilber
The ‘Miracle Kid’
Erie family seeks strength, community through son’s terminal illness
By Leslie Wilber
Colorado Hometown Newspapers
Nolan Ramsey loves Rice Krispy Treats.
He enjoys afternoons at home with his mom, Nancy Ramsey. They watch “Dora the Explorer.”
Nolan loves Dora.
He likes to play with his 9-year-old sister, Mackenzie, in the back yard of their Erie home or with his friends from Lafayette Elementary School’s preschool.
Nolan is proud of his new “big-boy bed.”
In so many ways, Nolan is just another 5 year old.
The normalcy in Nolan’s life is more than Sam and Nancy Ramsey could have expected when their youngest son was diagnosed with Hurler syndrome a little more than four years ago.
“He’s a miracle kid,” said David Slone, a pastor at the Ramsey’s church.
A deadly disease
Hurler syndrome — also known as mucopolysaccharidoses I Hurler — is an inability to produce some enzymes, according to the National MPS Society.
The deficiency allows the body to store minerals that should be flushed.
Kids with Hurler have high foreheads and wide-set eyes.
“They could be siblings,” Nancy Ramsey said.
Kids with Hurler have crooked spines.
Kids with Hurler have respiratory problems.
Everyone with Hurler syndrome is a child — most die by the age of 10.
Untreated, Hurler would kill Nolan before he turned 3 or 4, Nancy Ramsey said.
Those were the facts the Ramseys had when Nolan was diagnosed Jan. 24, 2003.
A rare diagnosis
Nolan was never quite healthy as a baby.
He was always congested, Nancy Ramsey said.
She and her husband could hear him breathe at night.
The Ramseys moved from Katy, Texas, to Erie when Nolan was 4 weeks old, Sam Ramsey said. Two weeks later, doctors operated on Nolan’s hernias.
Nolan lagged in milestones parents watch for: eating from a spoon, rolling over.
Doctors never seemed to think anything was really wrong with Nolan, Nancy Ramsey said.
“We kind of called it Nolan syndrome,” when discussing his ill health with Heather Bricker, the family pediatrician, Nancy Ramsey said.
A neighbor, Andrea Bell, told Nancy Ramsey that Nolan seemed to have poor muscle tone.
Nolan was 7 months old at the time. Bell suggested the Ramseys call Imagine!, a Boulder County group that works with the disabled, to schedule a screening.
When parents call Imagine! concerned about a child’s development, they’re asked to complete a questionnaire, said Leslie Eppinger, lead service coordinator.
“It breaks it down into categories,” Eppinger said — assessing a child’s social, emotional and physical development.
If a questionnaire shows a child is likely to have serious problems, an evaluation is arranged. Each evaluation is different, depending on the child’s apparent weaknesses, Eppinger said.
During his evaluation, Nolan failed the hearing and vision tests, Nancy Ramsey said.
She took Nolan to Norm Friedman, an ear, nose and throat doctor at Children’s Hospital.
“He starts asking these weird questions,” Nancy Ramsey said. “Does he look like his dad?”
In fact, Nolan doesn’t resemble his parents or his siblings. Even in baby photos, he looks different.
Friedman met with Bricker.
“They called the next day,” Nancy Ramsey said.
They told her they thought they knew what was wrong with Nolan. Bricker told Nancy and Sam Ramsey to visit her office at 2 p.m.
“I could tell just by the way she was talking it was not a good thing,” Nancy Ramsey said.
Friedman had met a child with Hurler syndrome before.
He had recognized Nolan’s heavy features.
“(The Ramseys) believe, and I believe they’re right, that God’s hand moved them here (to Erie),” Slone said. Otherwise, Slone said Nolan’s condition may have gone undiagnosed longer.
There are a few estimates of how many children are born with Hurler — the most consistent seems to be one in every 100,000 children.
Nancy Ramsey has heard as few as one in 500,000.
Odds are low that two carriers of the recessive gene would have children. The chance of those two people having a child with Hurler syndrome is one in four, according to the National MPS Society. Even children who win at the roulette table of genetics might themselves be carriers.
Hurler syndrome is so rare, Bricker had never heard of it.
When the Ramseys got to Bricker’s office there were books and printed pages spread on her desk.
“She said: ‘I wish I could tell you it was cancer,’” Nancy Ramsey said.
But it was mucopolysaccharidoses I Hurler.
“It took us a while to learn that one,” Nancy Ramsey said.
The kindness of strangers and friends
Since Jan. 24, 2003, they have been there: friends, fellow congregants at Mountain View Church, family and neighbors.
That day, Andrea Bell watched Mackenzie and the Ramseys’ oldest son, Cooper.
Later, she would organize neighbors along Madison Way and throughout Orchard Glenn to cook meals for the Ramseys.
When Sam and Nancy Ramsey talk about the worst times in Nolan’s life, they tell of the people who helped the family.
In a March 7, 2003 blog, Sam Ramsey wrote:
“We had a real blessing today. A friend of my cousin’s that Nancy has been corresponding with by e-mail drove a really long way to come visit us. We had a great time sitting around talking with Suzie for several hours and then went to dinner. Also her Bible Study group had put together a care package of videos, books and stuffed animals for Nolan.”
Nancy and Sam Ramsey started their blog in February 2003, when Nolan was admitted to a Duke University clinic for experimental cord-blood transplant.
The unit at Duke is one of two in the country that transplant cord blood to children with Hurler syndrome.
The treatment left Nancy Ramsey and Nolan in North Carolina for six months.
There, doctors killed Nolan’s bone marrow with chemotherapy, transplanted cord blood from a little girl and monitored his progress. Nolan died and was resuscitated twice.
The online journal is full of stories of people — some friends, some strangers — offering the Ramseys help.
Early in Nolan’s treatment, someone needed to be with him constantly.
David Slone’s wife, Stacey, flew to North Carolina to stay with Nancy Ramsey in the hospital.
Michelle Strayer, Sam Ramsey’s sister, stayed with Cooper and Mackenzie when their father traveled to his wife and youngest son.
At Mountain View Church, David Slone said members try to offer the Ramseys love, through any obstacle.
The Ramsey’s challenges are changing.
Nolan still makes frequent trips to the doctor. He has something like an allergic reaction to his donor cells, evidenced by a rash.
That means he takes a lot of steroids, which makes him hungry and in turn, pudgy.
“I’m a hungry kid,” Nolan told his mom, when asking for another Pop-Tart.
More than in the past, though, Nolan is healthy.
The threat of death doesn’t invade the Ramseys’ lives daily. But Nolan is starting to have problems that come from the outside world, rather than inside his body.
On a recent Sunday, the Ramseys and several members of Mountain View Church ate at a Lafayette restaurant after services.
Nolan tried to greet a stranger by tugging on her coat, Slone said. The woman shook Nolan off her coat.
“She swung him across the floor,” Slone said.
The woman apparently believed Slone was Nolan’s father.
She told Slone he should force Nolan to behave better, that all handicapped children need not be drains on society.
“Nancy has felt the disdain of people when they make fun of Nolan,” Slone said.
Nancy Ramsey said it doesn’t bother her much, as long as Nolan doesn’t realize people are making fun of him.
But Nolan is beginning to realize.
At a Lafayette Elementary School sock hop, a group of boys made faces at Nolan.
“He buried his head in my shoulder and said ‘Mommy, they’re mean,’” Nancy Ramsey said.
Nancy and Sam Ramsey have used this scorn to teach their children. Nancy Ramsey wouldn’t confront the woman at the restaurant.
“I want to teach my children to be good Christians,” she said, something that she felt she wouldn’t accomplish by smacking the woman or calling police.
Mackenzie befriends disabled classmates. It’s important to be kind to people, even if you think they don’t understand that you’re teasing them, Mackenzie said. They understand.
Lessons from Nolan
“A blessing.”
That’s how Slone sums up Nolan.
“Nolan walks in the room, and he just lights it up,” Slone said.
A boy in constant pain can be difficult, Slone said.
Sometimes Nolan is inconsolable, though most of the time he smiles.
“I think the Bible teaches us that we as Christians are to love unconditionally and serve unconditionally,” Slone said. “Nolan has given this church a chance to say: ‘We are going to love him like Jesus loves us.’”
Faith in God and faith that Nolan has a purpose sustains the Ramseys.
Sam Ramsey, who sells commercial property insurance in Boulder, said he doesn’t know how people without faith could endure similar hardship.
It’s not often, but Nancy Ramsey said she has wondered why this would happen to her family.
“You have to turn it around and say: ‘Why not me?’” she said.
Success
Nolan is a success, by his doctors’ measures.
He turns 5 in April, already exceeding his life expectancy before starting kindergarten in the fall.
Still, no one knows how long he will live.
Of 16 patients who shared the pediatric transplant unit at Duke with Nolan, four survive.
“They don’t know,” Sam Ramsey said. “If a child (with Hurler syndrome) lived past 15 or 20, that would be pretty amazing.”
Each night, the family prays before dinner.
“Every single night, I keep it short, because I’m hungry,” Cooper said. But he always asks for the same thing: for Nolan to get better.
Despite the transplant certificate above Nolan’s big, new bed and his frequent trips to doctors, Nolan doesn’t understand he’s ill.
One night, after the prayer, he asked: “I’m sick?” Nancy Ramsey said.
He might run on the playground, climb kitchen stools and enthusiastically greet new friends, but Nolan will never recover from the damage his own body caused before the transplant, Nancy Ramsey said.
All the difficult, often painful, procedures have been worth it if they extend Nolan’s life and help him function normally, Sam Ramsey said.
“I feel that way,” he said. “I wish I could ask Nolan if he feels that way.”
Sunday, February 18, 2007 10:25 PM CST Don't Laugh at Me
I'm a little boy with glasses, the one they call a geek
a little girl who never smiles cuz I got braces on my teeth
and I know how it feels to cry myself to sleep
I'm that kid on every playground who is always chosen last
a single teenage mother tryin to overcome her past
You don't have to be my friend if it's too much to ask
Don't laugh at me, don't call me names
Don't get your pleasure from my pain
In God's eyes we're all the same
some day we'll all have perfect Wings
Don't laugh at me
I'm a cripple on the corner
You pass me on the street
I wouldn't be out here begging if I had enough to eat
and don't think I don't notice that our eyes never meet
I lost my wife and little boy somewhere down that yellow line
The day we laid 'em in the ground was the day I lost my mind
Right now I'm down to holdin this little cardboard sign
Don't laugh at me, Don't call me names
Don't get your pleasure from my pain
In God's eyes we're all the same
Someday we'll all have perfect wings
Don't laugh at me
I'm Fat, I'm thin..I'm Short, I'm tall..I'm deaf.. I'm blind
Hey aren't we all
Don't laugh at me...... Don't call me names
Don't get your pleasure from my pain
In God's eyes we're all the same
Someday we'll all have perfect wings
Don't laugh at me
written by
Allen Shamblin & Steve Seskin, and
recorded by Mark Wills
Today was another one of those days, where I find myself wondering why? Why would God leave Nolan here, if his little heart is to be broken so much, if it is not enough that he has to endure so much physical pain, but that he must endure something I think can be even more painful, the ignorance of people. Last week it was seven year olds, I can almost excuse them, because of their age and maybe they have not been taught not to deliberately be mean to someone, but for an adult with children to be so ignorant and hateful to a four year old child and to have no remorse is unacceptable. I do not understand, I know life is not fair, life is hard, but I have not been able to let this go. My son was hurt, although he doesn’t really know all the commotion was about him or that what really happened was bad. I on the other hand hurt for him, my heart was wounded today and I have grieved. I have grieved for the other hateful, mean spirited people out there that my son will come into contact with over the years. I have grieved for his life that will never be normal (or what we call normal) , for the hardships he will endure because he is different, I have grieved for myself today for all the days I will have to wipe Nolan’s tears, because one more person has been thoughtless and hurtful. Why does it have to be so hard?
We were at Chili’s today; Nolan was being Nolan, talking to everyone, walking around the table. He was just returning from the bathroom with Molly a friend from church, there was a lady and a little girl walking in front of him and he was talking to the little girl and he grab the edge of the ladies coat the lady turned and shoved Nolan off her to the floor, several people witnessed this, Nolan was sitting with David and Stacey Slone at the opposite end of the table from Sam and I, the lady than proceeded to tell David that he should watch the Miracle Worker and gave Stacey and Him and nasty look. David jumped up from the table and followed her back to her table and asked her what she meant by that comment. She told him that handicapped children need to know how to behave. Some other stuff was said. He told her Nolan was only three and he was only trying to play. She said everyone with us saw him attacking her. He said he thought that she was rude and she stood up and shoved David. I did not know what was going on until David came back to the table. The only thing I knew was a grown woman had shoved my child to the floor. It was probably a God thing that I did not go over, because after I found out what had happened I was fit to be tied, than as the day wore on my anger became hurt and disbelief. I still can not believe a woman with children would say such hateful things about an obviously special needs child. What kind of person could live with themselves and what is she teaching her children. Earlier today while in Sunday school a young man at our church named David Thompson, spilled his coffee all over me. David is a grown up Nolan, he is a nine year old in a 25 year old body, but he is the sweetest man you would ever meet and he would do anything for you. He was so apologetic for spilling his coffee, not once but twice, after the second spill he said of himself that he was “so stupid”; I turned and said no, no everyone spills. I had on brown pants and the coffee just blended in so I laughed and told him I was fine you couldn’t even tell, I just smelled nice, like a good cup of coffee. My point being after the incident at Chilies I reviewed my actions toward David and hope that I was genuine while accepting his apology and hope that I made myself clear that everyone has accidents and that he was not stupid. My heart went out to him, for by him saying that means he has heard someone say that to him. I hope Nolan never thinks himself stupid for any reason and woe to the person that tells him he is.
Just venting tonight. My skin is not yet tough enough. Pray for me that I will always try to show God's love no matter what.
Love and Blessings
Nancy
Friday, February 16, 2007 3:48 PM CST
Winter continues here in Colorado. Today is a very nice day at 39 degrees and breezy, but no snow!!! This is the hardest winter we have had here since we moved here.
This week has been the Alice 105.9 36 hours for kids benefiting the Children's Hospital here in Denver. It is always an emotional few days for us as we listen to all the stories of other children and their families, including our own story. This station raises over 1 million dollars each year to help children's Hospital. Children's has been so wonderful to us and Nolan that we always do whatever we can to help out, last year we spoke on the radiothon and this year we were asked to again,but did not get back to them in time to get scheduled so we have been listening from home. Nolan's story is on a poll on their website @ www.alice1059.com, click meet the kids, click poll then vote for Nolan's story. Only until end of the day today. Our story seems so small compaired to some of the ones we have heard and the wonderful things that have happened here at Children's and some of the not so wonderful things, but everyone has the same theme, the doctors and nurses and staff here at children's are some of the best in the world hands down. We love them all and do not know where we would be without them.
Last week we went to clinic and were told the biopsy results stated that Nolan still has GVHD, are we surprised? NO! Are the Doc's surprised? NO! They just wanted to be sure before we proceed with a new method of treatment. What that treatment is you ask? We do not know yet, all the Doc's Duke and Denver were going to talk about this and make a decision, so maybe we will have some answer to that question after March 7th (Nolan's next appointment @ clinic) until then we are still on steroids and steroid creams fighting the raging rash, somedays are better than others, but most days Nolan has the mean red itchy rash. Other than the streoids and the rash making him a bear, he is pretty good. We had his IEP meeting the other day and it was decided that he will go to Kintergarden in the fall, but with a para and several sessions a week with OT and speech. I am a little nervous, but I am sure I will be fine. I think I am more nervous about the other children's reaction to Nolan. We went to a Sock Hop at the School last night and several 6 or 7 year olds were making faces at Nolan and making fun of him, and the hardest part was that he knew they were laughing at him and it made him sad, my heart broke in two and I wanted to slap the other little kids. How will I ever just let him go to school without me there to sooth his hurting little heart and will there always be kids so heartless and mean! I need to get a little tougher skin before next year!!
Thats all for now, I will try to update sooner than later!!
Love and Blessings
Nancy, Sam, Cooper, Mackenzie and Nolan
Friday, February 16, 2007 3:48 PM CST Winter continues here in Colorado. Today is a very nice day at 39 degrees and breezy, but no snow!!! This is the hardest winter we have had here since we moved here.
This week has been the Alice 105.9 36 hours for kids benefiting the Children's Hospital here in Denver. It is always an emotional few days for us as we listen to all the stories of other children and their families, including our own story. This station raises over 1 million dollars each year to help children's Hospital. Children's has been so wonderful to us and Nolan that we always do whatever we can to help out, last year we spoke on the radiothon and this year we were asked to again,but did not get back to them in time to get scheduled so we have been listening from home. Nolan's story is on a poll on their website @ www.alice1059.com, click meet the kids, click poll then vote for Nolan's story. Only until end of the day today. Our story seems so small compaired to some of the ones we have heard and the wonderful things that have happened here at Children's and some of the not so wonderful things, but everyone has the same theme, the doctors and nurses and staff here at children's are some of the best in the world hands down. We love them all and do not know where we would be without them.
Last week we went to clinic and were told the biopsy results stated that Nolan still has GVHD, are we surprised? NO! Are the Doc's surprised? NO! They just wanted to be sure before we proceed with a new method of treatment. What that treatment is you ask? We do not know yet, all the Doc's Duke and Denver were going to talk about this and make a decision, so maybe we will have some answer to that question after March 7th (Nolan's next appointment @ clinic) until then we are still on steroids and steroid creams fighting the raging rash, somedays are better than others, but most days Nolan has the mean red itchy rash. Other than the streoids and the rash making him a bear, he is pretty good. We had his IEP meeting the other day and it was decided that he will go to Kintergarden in the fall, but with a para and several sessions a week with OT and speech. I am a little nervous, but I am sure I will be fine. I think I am more nervous about the other children's reaction to Nolan. We went to a Sock Hop at the School last night and several 6 or 7 year olds were making faces at Nolan and making fun of him, and the hardest part was that he knew they were laughing at him and it made him sad, my heart broke in two and I wanted to slap the other little kids. How will I ever just let him go to school without me there to sooth his hurting little heart and will there always be kids so heartless and mean! I need to get a little tougher skin before next year!!
Thats all for now, I will try to update sooner than later!!
Love and Blessings
Nancy, Sam, Cooper, Mackenzie and Nolan
Thursday, January 18, 2007 10:07 AM CST Hello Nolan friends!
The rash is raging! We are back to every other day steroids!!! They do not even seem to be helping, sooooo we will be doing another skin biopsy to make sure we are still treating GVHD, they are almost 99 ure but want to be 100 ure. The next move will probably be photopharisis, long drawn out treatment but hey we have been messing with this for three years whats long and drawn out? There are a couple of other options and all the Docs are pow wowing to come up with the best option for Nolan. We go back next Wed. for a skin check and the biopsy I think. Poor guy all this dry cold weather is not helping!!! Even my skin is cracking.
Still going strong on the Potty!!!! I think he just has it. What a blessing! We thought he would never do it. Now we are starting to look toward kintergarten. I went to the first meeting last night for parents, kind of an open house. I left feeling a little discouraged, they were talking about how most kids come in writing there name and leave writing sentences, I was thinking Wow Nolan can't even say all the ABC's yet and he barley makes lines on a paper.Then they went right into the math and reading. I was very over whelmed and left early. We have Nolan's IEP meeting to determine all Nolan will need for kintergarten on January 31st, I hope it goes better than last night. It is all very scary! Why can't he just stay in Pre-K one more year with Ms. Kathy????
Anyway, Kenzie's big surprise!!!........ On Thursday morning around 5am, I went in to Kenzie's room and woke her up, I asked her if she could go anywhere in the world today where would she go. She rubbed her eyes, yawned and looked at the clock and said, but I have school today, I said again, If you could go any where you wanted where would it be, she looked a little bewildered and said American girl place. I said well get up and lets go!!!! You should have seen the smile that lite her face when it finally sank in that we were really going. I had all her bags packed (with several new outfits)and a new outfit to wear that day, I wheeled in an American girl suitcase with a place for her doll to ride in front, her surprised continued as we drove to Aunt Chelle's house and picked her up to go with us and even more awaited her as we arrived in New York. We grabed some lunch at the airport in NY and went to find our luggage and car, Boo kept asking why we couldn't get a taxi (she really wanted to ride in one) I kept putting her off and finally after a late arrival from Denver her three friends, Mckenzie and Kaylin Ronacher and Lauren Lambert and their Moms walk over to join us, she was a little shocked, then our driver walks us to a white stretch limo, I think her face was probably sore from smiling so much. So the adventure began. We had an awesome time in NY. We went to American girl for a day at AG, we saw Beauty and the Beast on Broadway, eat some wonderful food!!! ( my favorite thing)and saw all the wonderful sites of the city. Rode every form of transportation from limos to buses and everything in between. She will remember this Birthday for a long time to come, so will I. It was great to spend such quality time with my amazing daughter!! Now I have to come up with some equally wonderful birthday surprise for my amzaing soon to be 11 year old son!!! Cooper was a little disapointed that he did not get to go on the wonder trip, but he was happy for Boo. Nolan could have cared less, he only wanted me to stay home!!!
Well that is all the news from here. I will try to update again after we visit the Doc next week. Thanks so all who still check in on us we really appreciate the prayers and hellos!!!
Love and Blessings
Nancy, Sam, Cooper, Mackenzie and Nolan
Check out some of the new photos in the view photo section, the last one is from Boo's trip!
Sunday, January 7, 2007 2:30 PM CST Just a quick update. Nolan is almost potty trained!!!!!Can we hear a big WooHoo!!!!! He just out of the blue asked on New Years eve if he could sit on the potty and what do you know he has been going ever since and not just peepee!!! All that work trying to make him go for the last year is finally paying off. He is wearing a pullup full time and goes almost totally on his own. He has only had one accident and that was during a round of sickness where he really couldn't control it. We are so proud of him!!!!
All the kids had a yucky virus this past week, they only went back to school for one day, were sick the next day and we were snowed in again on the next day. We have been in the house snowbound for almost a full three weeks and another storm is in the forecast for Thursday!!! We have had more snow in the last three weeks than the last 5 years that we have been here! It is beautiful but it is getting old.
Hope We get out for Kenzie's surprise before the next storm hits!!! Everyone lift a little prayer that the storm holds off until Thursday afternoon.
Love and Blessings
Nancy,Sam, Cooper, Kenzie and Nolan
Tuesday, January 2, 2007 2:57 PM CST Happy New Year!!!!!!
Just wanted to send out Happy New Year wishes to all our wonderful friends and family. Thank you all so much for the last four years of love and support through all the trials and tribulations of Nolan's life. We love you all so much and could not have made it this far without you.
Nolan has started the year with a bang as usual. He threw up last night and has had a variety of green diapers this morning. He has had something called "small round virus" for the last few weeks but it had kinda went away or so we thought. He will go to clinic again next week for IVIG and Decluzamab. Not sure if the Rituxan worked, we had to put Nolan back on steroids for a bit to control the rash, it has been at an all time worst. His skin just peels off. This is our second time on steroids in the last month, we do a two week round and wean off, the last time we weaned off the rash came back in about five days. we are weaning this week and will see if the rash reappears. Anyway! Keep your fingers crossed that the Rituxan will kick in. We had a visit to Dr.Erickson last week, He said nothing has changed and we can still wait to do the spinal fusion surgery. We do not have to go back to see him until June. We will of course have our annual visit to Duke in May and see the other orthapedic specialist. Everything else is the same.
The kids will all be going back to school tomorrow. Yippie!!! Not that we have not had a great Holiday, it was, but two weeks trapped in the house because of the two major snow storms, well, need I say more. We still have about two feet of snow in our yard and the forecast calls for more snow on Friday. The white christmas was great though!
Mackenzies Birthday is coming soon, there will be more about that later! Uncle Shawn added a few new pictures to the pic page so check it out and I will try to get some more new pics out soon.
We hope your New Year will prove to be a happy one.
Love and Blessings
Nancy, Sam, Coop, Kenzie and Nolan
Wednesday, December 13, 2006 4:34 PM CST Happy Holidays and Merry Christmas
Well I did not get updated last week after the infusion but I am today. We are still sitting at clinic hooked up to meds. Today we started about 8am and will be here for about another hour 1/2. It is 4:30 now. Can we say long day!!!! Nolan has done fabulous! Last week we had quite the reaction to the new drug for his GVHD called Rituxan. Within a few minutes of the med starting he stared vomiting and we had some nice diapers the following days with vomiting on a few occassions. Today has been great. No vomiting and so far no poopy diapers. Dr. Ralph says his skin looks great already. I hope this does the trick. We are so ready to be done with GVH!!!!! We will have two more doses of the Rituxan over the next two weeks.
We are all getting ready for the Christmas play at church on Saturday and Sunday. I am ready to get it done! I think it will be a great show, everyone has worked so hard.
Then we will move on to Christmas!!! The kids get out of school next Tuesday. They can hardly wait! Sam's Mom and Dad will be here at the end of next week to spend Christmas with us. The kids will be out until Jan 3rd. Then there is a big surprise for Boo on January 11th!! I will share more of this later! Anyway the nurse just came in and we are done. So I will continue later!!!
Love and Blessings
Nancy
Monday, December 4, 2006 9:20 PM CST Merry Christmas and Happy Holidays!!!!
Nolan's new favorite words are "Ho Ho Ho, Merry Christmas everybody" Nolan is talking up a storm and using words most 4 year olds do not. Would you have ever thought!!! I know we sure wouldn't have. We are so proud of him and all his accomplishments in the speech area.
Well we are finally going to do something about this aweful GVHD - (graft vs. host disease). For the last two to three weeks Nolan's GVH has reached an all time high, he has been misirable, the rash covered him head to toe and was so itchy he couldn't hardly sleep, he has been rubbing on the furniture, walls, floor and having everyone scratch his back. We have used every lotion, cream, oil, med you could think of and he still felt like a piece of sandpaper. So Friday they started a high dose burst of steroids for two weeks (making his skin look and feel 100% better) and Today Dr.Ralph called and said they want to start Nolan on a fairly new Drug for GVHD, Rituxian (typically used for lymphomia and athritis) On Wednesday of this week we will start a 4 week dose of one infusion a week. The infusion runs about 6 hours. So we will be spending a few more days at clinic this month. Keep Nolan in your prays on Wednesday, if he has a reaction it will be Wednesday, the warnings I have read are not very nice, so just pray that all will go well. And pray that this drug works, we are sooooo ready to be done with GVHD. One downside to Rituxian will be one more year on IVIG. So one more year of monthly clinic visits then after a year we will move to every other month and then every four months and so on. We will also be meeting with the ortho surgeons on Dec. 13th so they can look at Nolan's spine and decide if we wait longer or do the surgery now. If the GVHD is clearer the dicision may be to proceed with the surgery.
Anyway in the midst we are preparing for the Christmas play at church, it will be in two weeks, I really enjoy running the drama but I am overwhelmed with the work and feel pressure to get it all done. I may not take this all on again next year. but it should be a good program and I can not wait to get it over and move on to Christmas.
We will be here for Christmas, Sam and Michelle's Mom and Dad are coming and their younger sister Rhonda and her Friend Daniel are also coming for the Holiday. The kids are so excited they ask everyday if they can open presents sent from my mom. They think if they ask everyday they will wear me down, but I am a really strong willed person!!!
Nolan got to participate in the Make a Wish store again this year,it was so nice and fun for him. Nolan went in with a volunteer and pick presents out for Sam, Cooper, Kenzie, Hunter, Chase, me, Stacey and himself. They come out all wrapped so I have no idea what he got and he won't tell, he says we have to wait for Santa. He is so cute!!! Thanks Make a Wish and Children's Hospital!!!
I will try to update after our first infusion on Wednesday.
I hope you all have a great Christmas Season.
Love and Blessings,
Nancy, Sam, Cooper, Mackenzie,and Nolan
Monday, October 23, 2006 8:29 AM CDT Updating seems to get harder and harder. I guess when things are going well and there is not much to report health wise I get lazy about updating, sometimes I don't think I will continue because I don't really know how many people really check the site anymore, but I do know of a couple of people who still check on us and for you I will continue to update about our little guy.
Nolan has been doing pretty well considering. We have already had a few little minor illnesses here at the beinging of fall. Nolan was out a couple of weeks ago with a very bad ear infection, they even think he may have ruptured his eardrum. He got a little better and then got worse, during this time he also had a severe "cold", which the docs think may have been the first case of the flu here in Colorado. We spent several days at home and Nolan is feeling much better. We will have a check on his ear on Wed. at clinic. Nolan's skin has flared and we have been working to get it back in check. It is very itchy and soar so when I put his cream and lotion on him he just crys. I feel so bad for him but we tell him without the lotion and cream it won't get better. Surgery for Nolan's back is still on hold, we will meet with the Surgeons again in December.
Nolan started his second year of preschool and does not seem to enjoy it as much as he did last year. There are a few more kids this year and he is not the center of attention so I think he had a rude awakening to this. Most days he says he wants to stay home with me!!! Nolan is very outgoing and will talk to almost everyone we see, in fact he was standing at the door yesterday at chuch telling people "thank you for coming to my church" as they were leaving after the service. He has the manors thing down. He also has the do it my way or I will scream and cry thing down too!!!! I know, it means he is spoiled, but how can he not be a little spoiled! I try really hard to treat him just like the other two and I really do, but they are kind of spoiled too! What can I say not everyone has lived through the junk these three have been through!!! It's my standard excuse!!!
Life is in full swing around here, we engage in Karate, Soccer, Ballet, Jazz, Tap, Praise and Worship dance, Praise Team, Swimming, OT, PT, Speech, Drama, Kids Choir, School Choir, Chello lessons, Youth life pods, Christmas Pageant rehersals, Monday night football small group, First Impressions team, Worship team, Sam and I are starting a business and we also try to have a little family time thrown in for fun!!! I always think things will slow down, but I guess they won't anytime soon, I hear the older the kids get the more stuff we will have. So I might as well get used to it and enjoy!
We hope to go to Texas for Thanksgiving. Sam has been extremely busy with work and really stessed out. So I can't make any promises, but we are trying to work all that out. Christmas we will be here in Colorado, the kids really like to be at the house for the holidays, they think we must be here in case it snows on Christmas.
Time is rushing by, I cant' believe it is almost Halloween. Nolan is going to be Buzz Lightyear, Cooper is Edward from Narnia, and Kenzie is the White Witch from Narnia.
Well that is all I have time for right now, I have a workout scheduled at the gym, so we are off to "gym school" as Nolan calls it.
Love and Blessings
Nancy, Sam, Nolan, Cooper and Boo
Monday, August 21, 2006 8:39 AM CDT Hello dear friends,
It has been a very busy summer. What I thought to be a long and slow summer reved up fast and never quite. We had a great surprise trip to Canada to see our dear friends Dwayne and Beverley Bartley. The trip there was a little eventful but I will save that story for another day!!!! We spent the 4th of July with Sam's Sister and her in-laws at Estes Park. What a beautiful place to be for fireworks, they are probably the best in the country!! My opinion of course. Then Cooper and Kenzie each had Camp for a week, Kenzie at Dance Camp and Coop at The YMCA Adventure Camp. Then soon after that they were off to Grammy and Grandpa's for Camp Grammy, We took a quickie trip to Texas to pick up the kids, so now here we are three days and school begins again. That is the condenced version of the summer.
Nolan has been up and down this summer. We were finally taken off Orapred!!!! But things have not been so great since this event. Nolan's skins has flared off and on and we now have chronic diarrhea. Nolan has lost about five pounds over the last three weeks and he hardly eats anything. A complete switch from the boy I could never fill up a few weeks ago. He has also had some major leg pain going on all summer. He never wants to walk anymore. So we will see the doctor on Wed of this week and see about x-rays for his legs and what to do about the gut. You can tell he hasn't felt well, his usually sunny disposition has gone into hiding, we see little glimpses of the fun, cuddley Nolan, but we know that he is not feeling like himself, even the therapist have had a hard summer with him. Nolan will be getting new orthadics for his feet, he has a very rolled ankel and foot on the left side and his fingers have tightened more into the claw formation, so he will also get new hand splints. We did get new glasses this summer and he seems to wear them more than the old ones, they are about 4xs stronger than his old ones so maybe he can really see now! Nolan will start school Sept. 5th. He is so ready. I know Thursday will be hard because Cooper and Kenzie will go off to school and he will have to stay home for two more weeks. It will be nice to have a little time with just he and I. He did not get to go to any camps or to visit the Grandparents so maybe we can do a little bit of fun stuff just us over the next two weeks.
Well that is about all the news for now, I keep looking for things to slow down and they only seem to get busier, so I guess that is wishful thinking!!! I will try to update more often now that school is starting!!!
Hope everyone had a great summer and good luck with the new school year starting!!!
Love and Blessings
The Ramsey's
Wednesday, June 7, 2006 10:57 AM CDT Well here it is already June. The kids get out of school tomorrow. Nolan actually got out last Friday, and we have been enjoying a week home by ourselves. We are home today waiting for the carpets to be cleaned, we have some new furniture coming tomorrow and the house is upside down. Anyway, if this is any indication of how summer is going to be I can’t wait until September.
We will be home next week then the next week Sam has planned a Mystery Trip!!!! We will be leaving on June 18th and returning on the 26th, he said he will tell us what we need to pack four hours prior to departure!!! Very exciting, but how do I prepare!!! So I do not know what we are doing or where we are going! I will report back when we return!!!! I had indicated in the last update that we were not going to be going anywhere this summer, I guess Dad had other plans!!!! Anyway the older kids will be going to Camps in July and then to Camp Grammy in August, Nolan will probably not go again this year, I think he might make the Grandparents a little nervous!!
Back to Nolan, all the testing went great in Durham. Nolan was a little trooper and performed well. He went in the room by himself at the developmental testing. Stacey and I got to watch from a two way mirror with headphones. He did really well, or at least I thought he did really well, we still have not gotten the report back yet. Nolan’s speech is incredible everyday he learns something new, he speaks like 40 year old.(he kind of looks like a 40 year old too) Anyway, all the other testing was stable, that is all we really ask for, things are not suppose to really improve, they just don’t get any worse, that is the goal. Dr. Fitch recommended the spinal fusion before he gets to kindergarten or 1st grade; we will still see Dr. Erickson here in Denver for the final say, but it was nice to hear his opinion. We have started a slow wean of the steroids and I do mean slow, anytime we have started this before the GVHD has flared and we end up higher than we were to start with. Nolan’s skin still looks good right now,(today he is a little redder than he has been) but we are still having the bouts with vomiting and diarrhea about every 10 to 14 days, it is really strange and nothing every grows in the cultures. So we wait for the next flare and will test for some other stuff. Nolan will continue with all his therapies thru the summer so he does not regress. Well that is about all the news on the Nolan front. He is the joy of our days (well most days). Life has gotten pretty normal, if we really know what normal is anymore, baring the occasional trip down to Children’s (every four weeks), the daily medication, and the weekly therapies. We couldn’t ask for much more. The blessings are abundant. We have three relatively healthy children, a beautiful home, nice clothes on our backs, good food in our mouths and we live in a free country where we can still worship God without cause for fear.
I hope your summer is as fun filled and happy as we plan ours to be, and remember if you are in the neighborhood to stop by, we would love the visit!
Love and Blessings,
The Ramsey’s
Monday, May 15, 2006 4:05 PM CDT Duke Visit 2006 – Three Years Post Transplant
Here we are on our way back to Duke for Nolan’s three year post visit. Nolan is having a grand time on the big airplane and has been making friends all morning. Flying with Nolan is always an adventure!!!! Nolan has already made friends with the Pilot, He announced a little hello from the cockpit to his special friend Nolan, (unfortunately Nolan was watching his DVD player with headphones and didn’t hear it, but Stacey and I did!!) Stacey, Nolan and I will be in Durham for the next four days. The rest of the family has stayed behind, too much end of the school year stuff. We had some testing done at Denver before we left, MRI, ECHO, EKG and some assortment of blood work. We will be visiting Dr. Escolar, Dr. Fitch, Gill and Dr. Paul, we have more blood work, pulmonary testing and a variety of x-rays. Not as busy as in the past but still a full four days! We missed the Rainbow walk again due to my being in Brazil during that time. Stacey and I just returned last Tuesday, it feels like we have been traveling for a month! It’s good to be stateside and to have Nolan with us. I missed all the kids so much while I was in Brazil. It was a great trip and I had to step outside the box on a couple of occasions and speak about Nolan and his ordeal, that was totally a God thing!
Nolan’s GVHD is doing great, Sam really got his skin in tip top shape while I was gone. Of coarse he looks like a greased pig most of the time but hey no rash!!!! I still don’t know how we would ever put Nolan in a cast for four months using this much ointment and cream. We are talking with Dr. Fitch again this year to see his thoughts on waiting on the spinal fusion surgery. Dr. Erickson in Denver is in wait mode, he does not want to rock the boat so to speak. Other then the on going GVHD issues we have had a few bouts of intestinal bugs, or we think bugs, nothing ever shows up on the cultures, but we hope it is just little viruses. The thought always looms in the back of my mind of internal GVHD, we had a pattern where Nolan got sick every couple of weeks when the GVHD was in his intestines and we are slowly showing a pattern similar again. Lets hope this is not the case.
Since I posted last we have celebrated Nolan’s fourth birthday. He had a party with all his pre-school classmates at Chick-fil-a. Pastor David made Nolan an Elmo cake, which he loved!!! It was the best party ever!!! (or so Nolan says) It was cute, the cow came out and played with the kids and the staff was great, they all know Nolan personally because Stacey and I take Nolan to Chick-fil-a at least once a week sometimes more, when we first started taking him, he was not allowed in the playland because of all the immune issues, but slowly he was allowed to play there and now he heads straight to the playland area. The employees faces light up when we walk thru the doors. He has made his mark!!!
Summer is fast approaching and I am not prepared. I still have to register Cooper and Kenzie for Summer camps. I am a little behind, with the MAD Fundraiser and the MAD trip to Brazil and Nolan’s trip to Duke I just can’t get everything done. We have no big plans for summer, our major trip this year was Make a Wish, so we are just hanging out for the summer. We may try to make it to Texas sometime this summer, if not I think we will be there sometime in October for a long weekend. The kids activities keep us running so it makes it hard to plan much travel. So if anyone is interested in a summer visit we will be around! We have plenty of room, we can sleep at least 8 to 9 extras!!!!! We make a great hotel home base for travelers!!! There is plenty to do around Colorado!
Well I hope this satisfies all the interested Nolan watchers!!! I know I have not been very good at the updates. I will try to give an update after all our visits this week. Keep us in your prayers, it is not always fun for Nolan here, Stacey and I enjoy seeing everyone from Duke, but Nolan is the one doing all the yucky stuff.
If any of our old friends are around this week, please call us 303-859-0179 we would love to say hello. Jennifer that means you!!! I will try to call you when we get to town! We are staying at the Homewood Suites in Durham (I think) I think this is near the Khols and Outback.
Love and Blessings
Nancy, Stacey and Nolan
Thursday, April 6, 2006 9:30 AM CDT Wow! Time flys. It is already April. We Celebrated this week three years post transplant on Tuesday. We had Cake with the Slones and sang Happy Transplant Day to you. Nolan of course thought it was his Happy Birthday. I reminded him his Happy Birthday is in two weeks. We just marval at the progress he has made over the last three years. What a wonder. God has moved the mountains and we rejoice on a daily basis for the quality of life Nolan has been given. Not all is perfect but to him, he is normal!
Not long ago sitting at the dinner table, Cooper prays before our meal almost every night and at the end of his pray (for the last three years) Cooper adds "God help Nolan to get better" As Coop finished the prayer Nolan looked at me and asked "I sick?" I sat with tears in my eyes and thought about how to respond. It was a fleeting thought on his end, but it has stayed with me. Nolan is just Nolan, he thinks clinic and meds are what everyone does. Although he does realize that Orapred is the worst tasting medicine out there. Every morning we go through "I not ike at one"(I don't like that one) He will eventually take it like a big boy, with a mild face and the word "Nasty". He does like Tacrolimus and would take more than his normal dose if I didn't put it away where he can't reach.
Sunday Nolan was in a fashion show with the Colorado Avalanch players benefiting Children's Hospital. It was wonderful, they players were so great with him and he loved every minute. He walked the runway with Rob Blake and we met and got signatures for almost all the players. It was a geat experiance, we also met many of the other families from Children's that we have heard the story's, but did not know personally. We especially enjoyed meeting Austin. We heard his story on the Radiothon we were apart of in February. After he got off the runway he asked if he could go again, he really like all the applause!!!
Nolan also made his television appearance on March 11th on the WB2 News. Vida Urbonas of WB came out and did a story on Nolan and Hurler Syndrome. He really enjoy's the limelight! What a ham we have.
No news on the spinal fusion surgery, we will go in June for another evaluation with Dr. Erickson. GVHD is still going strong in fact it is at an all time high, Nolan's skin is really flaring,and we are hitting our heads on the wall trying to get control. We will be going to Duke on May 15th - 18th, so maybe we will have somemore insite on what we should do next.
Keep Nolan in your prayers over the next few weeks, he will be having all his annual testing done before we leave for Duke, MRI, EKG, Echo, X-ray's and specialist appointments. Not always pleasent stuff.
I will also be gone to Braizl, April 27-May 9th, pray for Sam and the Kids, it is always hard on the kids for me to be gone so long.
Thats it for now!!
Love and Blessings
Nancy, Sam, Cooper, Kenzie and Nolie
Wednesday, February 22, 2006 3:16 PM CST Hello, We are sitting today at Children's getting our infusions for the month. Nolan looks really good, again except for the skin. It is our on going problem. We did meet a few weeks ago with Dr. Erickson the orthopedic doctor, as of now we are waiting. He said there has been no significant change, so he did not want to mess with anything right yet. We will see him again in June, for the next evaluation. I would like to go ahead and get this taken care of, as the older Nolan gets the harder it will be to handle him in a cast.
Nolan, Stacey and I will make the Duke trip in May, there we will see Dr. Fitch, along with Dr. Szabolcs and Dr. Escalar. I always love going back, it is so good to see the progress from year to year. We will be there May 15-18th. Hope to see some of our old friends while we are there.
I just returned from Houston, I took a few days to recharge with my special friends there. It always feels like home when we go, Sam and I miss you all so much. Thanks Holly for a great weekend! I hope to see some of you again this summer!!! We are also open for visits!!
I will be going to Brazil with Mad Ministries again in April. I will be gone from April 27 thru May 9th. Pray for Sam, he will need it!!!
Today we are participating in a Radiothon here at the hospital. Nolan's story is being told and we will be live on the Radio around 4 pm. The radiothon will be until Friday, Nolan's story will run several times over the next couple of days. He is such a little celebratie! The stories are so amazing, it is a very emotional day as we reflect back on our journey. We look back and think wow, is this really our story? It seems like it should be someone else. It all is so normal to us now. Our family developed a new kind of normal. Coming to Children's is so routine now, hooking up IV's, putting emla cream on Nolan's chest, giving meds morning and night, it is just a way of life! I often don't notice Nolan's delays, until I see children his age, this weekend Sloan just blew me away, she is so grown up, she thinks so differently from Nolan. The other day a little boy looked at Nolan and said look he still wears diapers. I left with a few tears in my eyes, I almost opened my mouth to tell a three year old that Nolan was different, but I stopped and shook my head and told my self, it dosen't matter, he is hear and living a life we thought would not be possible. I am thankful!
We also have adopted a puppy!!! Her name is Lucy. She is 13 weeks old, she is a schnoodle. The kids just love her. Lucy is very cute and I think she has been a great addition to the family. The kids have been caring for her(for the most part) Nolan tortures her. He is always picking her up and moving her around. Well at least she has a good disposition.
I am still working on the pictures for the site, I really need an assistant!!!! Anyway when I have a chance!
Well that is all for now, I am trying to get better at the updates!
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolan
Wednesday, January 25, 2006 4:22 PM CST Hello dear friends,
Again I have to apologize for the slowness of my updates.
Merry Christmas, Happy New year and I might as well say Happy Valentines too!!!
Much has been going on over the last few weeks. We have just returned from our fabulous Make a Wish trip to Disney World!! Nolan had the time of his life, well we all had the time of our lives, we were truly treated like royalty! We rode every ride first, we sat on the front row for all shows, we were first in line for all the characters. Make a Wish and Give Kids the World really have it going on. We could never plan such an elaborate trip, a childs dream! The limo ride in itself was pricless (at least for Kenzie and Cooper) Nolan kept asking was our car broken? I hope to get some pics up soon. We have about 500!
Christmas was great, busy, but great. I am planning to send out Valentine greetings, because I did not get my christmas cards mailed. I hope I can at least get that done. Nolan's schedule plus Cooper and Kenzie's schedule keeps me running almost 24/7. We have Wed.nights off and thats about it. I have plans to slow things down a bit but for now we rush, rush, rush!
We taped an interview on Monday for a Radiothon at Alice 105.9 radio to benifit Children's Hospital. It will run Febuary 22-24th, we will also do a live interview on Web. Feb 22nd here at the hospital at 4pm. Nolan our family star is scheduled to do a TV interview soon with WB2 news. He has become quite the advocate for Children's hospital here. We will also do the Fashion show with the Avalanch players on April 2nd. All these events benefit Children's hospital.
On the medical front, GVHD!!!!!! Will it ever go away? I think not! We have not seen a change for the better and continue to look for the best options to treat Nolan. He is a little trooper and just keeps on going. He is my hero!
Dr. Ralph has some new ideas but they all come with some pretty high risk side effects, so we are still looking. We meet with the orthopedic surgeon next friday for a check on his spine. If things are the same as the last visit, ie. spine has not moved, we can wait until summer for the surgery, buuut, it the spine has moved we can look forward to a surgery in the coming weeks. We all pray for the summer surgery. This way BMT gets more time to find a way to control the GVH, Nolan gets to finish his first year of pre-school and I get to go on the mission trip to Brazil again. Anyway, all other aspects of health are great!!! Nolan's speach has really taken off, we can't hardly get a word in with him. He has so many cute little things he says, my personal favorite is "me not yike yath" ( I don't like that) School is going great, he is a little distracted sometimes and they have a hard time keeping him on task, but hey he is only three! (well he will be four in April).
Anyway that is about all for now.
Love and Blessings
Nancy, Sam, Cooper, Kenzie and Nolan
Wednesday, November 30, 2005 3:12 PM CST Hello, sorry for such a long wait for new information. Nolan is doing great. Still having some GVHD, but it is pretty much under control. We are attempting to move to once a month clinic again. We are sitting at clinic this afternoon getting decluzamab and IVIG, Nolan is watching Elmo and I am working on the computer. It seems like I hardly have a chance to just sit and check website, update or even check e-mail lately, We are in the midst of Christmas Pageant at Church and I have started working on Starfish Carnaval(annual fundraiser) for MAD, ministries again. I have been feeling a little overwhelmed!!!! Pageant will be over in two weeks, so maybe things will calm down a bit.
Hawaii was fabulous!!! Need I say more! I could do that again sometime!!
Make a wish has scheduled our trip to Disney World for January 7th - 13th. We will also be meeting Barney while we are there! The kids are very excited, (especially the part about missing four days of school).
Sam's Parnets were here for Thanksgiving, we had a great week with family. It's back to the busy routine this week.
Christmas is knocking on our door it seems, wow, where has the time gone. We are staying here for Christmas this year, planning for a quite Holiday. With the Make a Wish trip just around the corner, we thought we would just take it easy for Christmas.
School is still Nolan's favorite place to be, he love's Ms. Cathy and talks about it all the time. Yes Nolan is talking up a storm. We may not understand it all but, he never stops!!
Nolan also made the 10 O'clock news the other night, if you want to catch to video clip go to www.9news.com and enter Hinote in the search, when the story about Dan Hinote, a Denver Avalanch player comes up, just click on the little video link. Nolan appears three times in the story.
Well Nolan is finally sleeping so I am going to run down to the cafe for some food. I will try to update more often!
Merry Christmas
Love and Blessings
Nancy, Sam, Coop, Kenzie, and Nolan the Movie star!!!
Friday, October 14, 2005 7:42 AM CDT Sorry for the delay in information, I have not been on the site for a few days.
Nolan is doing great. Loving school & making friends. He is the talk of the classroom. Everyone he comes in contact with just loves him.
We did meet with the ortho surgeon a couple of weeks ago, he says every thing is stable for now and we can wait a while longer for the surgery. He said it will have to be done soon, but he thought there was no harm in waiting a few more months. We would hate to pull Nolan out of school as he just loves it so much.
GVHD is still under control. We are trying a slow wean of some of the medication, but it will still be a while. He still has a rash on his legs even with all the meds.
Sam and I are taking a little trip to Maui next week. This will be the first time both of us have been away from Nolan ever. Ana Carla and my Mom will be here taking care of the kids, you might lift a few prayers for them!!!!! It will be a nice break for us and a great time of renewal.
We have not heard about our Make a Wish yet, the plan was to go sometime before Christmas, but nothing yet. The kids are just chomping at the bit. They can not wait!!!
Well that is all the news for now.
Pray for all the MPS kids and Transplant families.
Love and Blessings,
Nancy, Sam, Cooper, Kenzie and Nolan
Wednesday, September 28, 2005 2:06 PM CDT My heart is broken. MPS has taken three sweet little ones this week. Jillin, Julia, and Asher all went to heaven. Please pray for these families as they deal with these loses. These are the days when I can not look to the future, I don't want to know. We live for today. We thank God for the moments we have had and the moments we will have today. My prayers are with these families.
www3.caringbridge.org/oh/jill/index.htm
www.caringbridge.org/page/hopeforjulia
Friday, September 9, 2005 12:17 AM CDT NEW PHOTOS!!!!!!!!!!!!!!!!
Check the photo section!!!(updated 9-14-05 by uncle shawn)
Day three of pre-school under our belt!!!!
Nolan really likes school. He missed his first day on Tuesday because the entire family spent the holiday weekend with Roto virus. It started Saturday with Kenzie and ended Tuesday evening with Sam, with Nolan, Me and Cooper in the middle. So we are all feeling a bit better and everyone returned to work and school yesterday. Of course Kenzie came home yesterday with a "stomach ache" I think she just needed some mommy time, because the moment we entered the house she was healed and never felt better. So anyway, School, Nolan runs into the room with his little froggy backback and is so excited to be there. He hardly notices when I leave. This is good, right? I had a few tears wed and yesterday, but did ok today until it was time to pick him up and I went into the room and they were doing the goodbye song and using Nolan's name, it made me tear up again. Well I am sure I will get used to school. Nolan seems so young compared to the others, he looks like a baby next to them. I am told he will start to copy his peers. Nolan even wears his glasses the whole time he is there, of course he takes them right off when we get to the car. Oh well!
GVHD seems to be back into place for now. Of course still no surgery on the high doses of orapred, tac, protopic, trimcinolone, and decuzamab. So we wait! Every thing else on the Medical front is fabulous!!!! We couldn't be better!!
On monday Make a Wish came to talk about Nolan's wish. (of course I was throwing up every ten minutes, so I missed most of the meeting) We have decided that Disney World will be the best trip for Nolan and the whole family. We will stay at Give Kids the World, Nolan will also get to meet his special purple friend "Barney" while we are there. That I am sure will be the highlight of the whole trip for Nolan!!!! So the plan is sometime between now and Dec. 19 we will be going to Florida for six days. We are very excited and very grateful to make a wish. It will be an amazing trip for Nolan and the rest of us!!! Thank you Make a Wish Colorado!!!
Also I would like to invite anyone local to come by on Saturday Sept. 10, My neighbors and I are having a garage sale to benefit a Katrina relief fund, all proceeds are being matched 100y Sam's Company, so we would love the support!! Hope to see some of you here!
Please keep the Bates family in your prayers, Services for Maddy are on Saturday. Thanks to everyone who has been praying for this family.
I am working on the picture thing, I will try to add some new ones today or tomorrow or Uncle Shawn will!! HeHe!
Love and Blessings
Nancy, Sam, Cooper, Kenzie and the amazing Nolan
PS I did get some new photos on the photo page, but they are kinda big, so enter at your own risk.
Wednesday, August 31, 2005 4:31 PM CDT Again I start with sad news of another transplant friend's passing. Queen Maddy left this world this morning in the arms of her mom and dad. I ask for prayers for this sweet family. Their journey has been long and hard and ends where so many of the journey's end, in heaven. If you would like to stop by their site, I am sure your message would be appreciated. www.caringbridge.org/ca/queenmaddy
I struggle to write this afternoon, I watched Nolan at clinic all day hooked up to IVs and then running around on the patio when we got home and could not help but shed a few tears when he ran inside and gave me a big hug, like he missed me and we had just spent the entire day together at clinic. We have come so far, but still have far to go. We are one of the lucky ones, the few who make it through the long journey of transplant. I am always reminded how quickly things can change and we have no promises of tomorrow. For today things are good and we lift our praises, but we do not know what tomorrow or the next holds and that's okay.
Please remember all the transplant kids in prayer and the families of the sweet angels.
"Thank you Lord for wonderful things you have done in our lives and the life of Nolan. I am honored to have the awesome responsability of raising Nolan, with all the trials and challenges, I thank you. I praise you for allowing us the previledge of knowing Maddy Bates. Watch over her family and give them strength for the days ahead.
In your heavenly name, Amen."
Love and Blessings
The Ramsey's
Sunday, August 21, 2005 3:47 PM CDT Just a quick prayer request. Maddy has taken a turn for the worst, things are not looking very good, Maddy's family is requesting everyone to pray and stand together in agreement to heal Maddy , they will be praying tomorrow at 3 pm eastern time, (1pm mountian) please join with this family as they pray. www.caringbridge.org/ca/queenmaddy
Thursday, August 18, 2005 8:28 PM CDT
Tonight I update with a sad heart, a friend we met at Duke, Cody went to be with Jesus this afternoon. Cody had a long battle with cancer and his little body just gave out. Please remember his family in the days to come as they face a life without this sweet boy. You can visit Cody's website at www.caringbridge.org/va/cody His mother, Eleasha was a real inspiration to me while we were at Duke.
It always catches me off guard when another of our friends loses the battle, I am never quite prepared. As I looked at pictures of Cody on the website the other night it easily brought back some of the most horrific images of Nolan on the vent fighting for his life. I can only imagine Eleasha's grief. Each child we knew at Duke touched our lives in a special way, and as each one passes they take a piece of my heart, someday I fear there will be no more pieces to take. Again I lift praises to the Lord that we were spared this grief, that Nolan was given another chance at life, yes a life with obstacles but a life to live. How blessed we are. I pray we never take that for granted.
Nolan's clinic visit went well this week, still some fear of the "docur" (doctor) His GVHD seems to be under control at last. Under control with Orapred,5K506, Decluzamab, Protpic, Trimcinolone, and nystatan. We still can not think about the spinal fusion with all these medications, but at least the rash is at bay until we decide what else to do.
School starts for Cooper and Kenzie next Thursday!!! Yippie!!! I am ready for them to get back to a regular routine. Nolan will start pre-school Sept 6th, another Yippie!! we are very excited. Pray that all goes well and Nolan will get to start. He talks about school all the time. I know it will be a good experience for him.
Well that is all I have for tonight, Please continue praying for Maddy, she is still in PICU but doing some better, I have a couple of other Hurler babies going thru transplant that are not doing to well right now and are also in the PICU Please pray for Teagan in Ft. Worth at Cooks Hospital and Asher at Duke.
If you are still out there checking on us, sign in and let us know, we would love to hear from you and really appreciate the support.
Love and Blessings
The Ramsey's
Thursday, August 18, 2005 8:28 PM CDT Tonight I update with a sad heart, a friend we met at Duke, Cody went to be with Jesus this afternoon. Cody had a long battle with cancer and his little body just gave out. Please remember his family in the days to come as they face a life without this sweet boy. You can visit Cody's website at www.caringbridge.org/va/cody His mother, Eleasha was a real inspiration to me while we were at Duke.
It always catches me off guard when another of our friends loses the battle, I am never quite prepared. As I looked at pictures of Cody on the website the other night it easily brought back some of the most horrific images of Nolan on the vent fighting for his life. I can only imagine Eleasha's grief. Each child we knew at Duke touched our lives in a special way, and as each one passes they take a piece of my heart, someday I fear there will be no more pieces to take. Again I lift praises to the Lord that we were spared this grief, that Nolan was given another chance at life, yes a life with obstacles but a life to live. How blessed we are. I pray we never take that for granted.
Nolan's clinic visit went well this week, still some fear of the "docur" (doctor) His GVHD seems to be under control at last. Under control with Orapred,5K506, Decluzamab, Protpic, Trimcinolone, and nystatan. We still can not think about the spinal fusion with all these medications, but at least the rash is at bay until we decide what else to do.
School starts for Cooper and Kenzie next Thursday!!! Yippie!!! I am ready for them to get back to a regular routine. Nolan will start pre-school Sept 6th, another Yippie!! we are very excited. Pray that all goes well and Nolan will get to start. He talks about school all the time. I know it will be a good experience for him.
Well that is all I have for tonight, Please continue praying for Maddy, she is still in PICU but doing some better, I have a couple of other Hurler babies going thru transplant that are not doing to well right now and are also in the PICU Please pray for Teagan in Ft. Worth at Cooks Hospital and Asher at Duke.
If you are still out there checking on us, sign in and let us know, we would love to hear from you and really appreciate the support.
Love and Blessings
The Ramsey's
Monday, August 8, 2005 9:31 PM CDT Well we have been busy for the last few weeks. Nolan had his medi-port replaced today. On wed. his port just stop working, what a nightmare that was, he had to get an IV so he could get the IVIG and Decluzamab. Five sticks later Nolan has his IV and a strong fear of the medical staff, something we have never really had before, now we can not even walk into the hospital without Nolan saying no,no, no doctor. I hope now that we have the new port that will subside. We opted for the port that will allow them to do the photopharesis, that is if they can find someone that will do the procedure on a child as young as Nolan. So we will wait and see. The surgery went well and Nolan is resting this evening. It is so nice when the anesthesiologist sees your name on the surgery list and ask if he can switch cases so that he can be the anesthesiologis for the surgery, we just love Dr. Lane. He has been Nolan's anesthesiologist since he was diagnosid with Hurlers, and knows his airway better than anyone. I don't know if it is a good thing we are so well known with all the docs or not. We will have clinic on Wed.so I am sure accessing the new port will be a tramatic event. It is similar to the old port but it is a little bigger and different shape. Nolan's excess weight that he has gained from the steroids has caused his hips to be a lot stiffer and he is running a little lopsided. He has gained about 10 pounds in the last three weeks. His little cheeks have puffed up some also making speech a little harder to understand. We hope if we get to do the new procedure that we will get off the steroids soon. We will meet with Dr. Erikson in September to again talk about spinal fusion in the winter. That is about all the news on the medical front.
I have a couple of prayer request, Queen Maddy is once again in PICU and on the osolater(vent) please lift the Bates family up as they continue the fight. Also another friend we made while at Duke, Cody is in the PICU and not doing very well, please remember him and his family. Both these families need all the prayers they can get. They have been fighting a long time and really need some good news.
Thanks to Aunt Chell for the wonderful dinner tonight!!It was great to come home and already have dinner ready! Thanks also to Ana Carla for staying with Kenzie and Cooper today while we were at the hospital with Nolan. Without these special people in our lives I don't know where we would be.
Love and Blessings
The Ramsey's
Tuesday, July 26, 2005 11:16 PM CDT Numbers in the 60's!!!!!!!!
We heard from Dr. Quinones and the enzyme test has returned with numbers somewhere in the 60's. (that is normal range) Praise the Lord. Thank you all for the prayers and supportive messages. We are just so relieved and thankful. Of course with every bit of good there always seems to be a little bad, not too bad just a few more steps backwards if you asked me. With the same phone call about the enzyme test, Dr. Quinones let me know that with the GVHD flaring like it is they would like to start decluzamab every week for a while, that means we are back to weekly visits to clinic. We have our first weekly tomorrow, we will also be discussing one of the procedures that would help take care of the GVH once and for all. We hope! It would possibly mean a central line (broviac?) I can't remember how to spell, but to me this would be like having a new toy to Nolan, something he could play with attached to his chest. But we want what is best for Nolan and if that is the route than that is the way we will go.
Today we had lunch with friends Stacey and Dianna and sitting at the table Stacey started asking Nolan to point out different body parts, starting with where is your eye, your nose, your mouth, you know and on and on then I asked Nolan where is your port and he grabs his left shoulder, then I asked him where is your central line scar and he lifted his shirt and pointed, we all got rather quiet and thought about the reality of that. I have had a few of those moments lately and I just have to stop and pray a prayer of thanksgiving, I am so thankful Nolan is still here with us, he makes our family complete. I will never regret anything we have gone through or will go through for I know that we will always have multiple doctors, surgery will always seem to loom in the future and therapy is the afterschool activity just as karate and dance are for Cooper and Kenzie. Life is just different with Nolan, I sometimes miss how things used to be in the old life pre transplant, but if I dwell there too long the depression sets in. Life is just different now. Not worse just different. Priorities have changed.
Well I will check in again in a few days after we see Dr. Quinones.
Love and Blessings
The Ramsey's
Tuesday, July 12, 2005 9:59 PM CDT Hello friends,
Thought I would give a quick update on the little guy. GVH still running wild, but we hope to have it back under control soon. We started full blown steriods again last Thursday. Yea, Steroid Baby is back!!! We thought we left him somewhere several months ago, but he found us again. The thought is that the steroids will clear Nolan's skin for now, then we can decide how we want to treat the GVHD and get rid of it. Photopherisis(?) is one thing that has been talked about also Puva. Similar procedures, time consuming, one includes a new central line, Yippee! Dr. Quinones did say we have taken a huge step backwards. Other than a nasty rash things healthwise are good.
We are waiting for second results of the enzyme test from Dr. Wenger. The first test came back extremely low(numbers about 19) compaired to last years (numbers about 53.3)so all the docs decided a retest was in order. They are a bit concerned, not alarmed, just concerned. If the numbers truely are 19, something is up, they just don't know what. We are trying not to focus on the test results and busy ourselves until August, it will be about four weeks until we hear anything. Again we hurry up and wait! Spine surgery is still on hold until GVHD is not a problem any longer. Our med list that was at one time growing smaller and smaller is once again on the climb, I am waiting for the BP meds to be added back, with all the tac and orapred next visit I antisipate a higher BP. Well that is all the medical stuff for now.
Summer has been flying. We took a two week trip to Texas to visit friends and family. We had a wonderful time in Dallas with Nana and Uncle Bubba, then moved on to Houston to see our good friends the Sticklands, it was like we never left, how easy our children fell back into the freindships they once had. Holly and I cried the evening before we left, how I miss her and all my friends in Katy, Home is where you leave your heart and pary of my heart will always be in Katy, I still call it home even today. We have such special memories there, all three of the kids were born there and Sam and I had many wonderful friendships that both of us liked the husband and wife, how rare is that! We miss you all, the Kruegers, Stricklands, Stocktons, Evans, Holtzchantcs(sp), Burches, Barreras, Lanes, Daniels and many more I fear I will forget to name someone. We love you all so much and the support you have given has been unforgetable. Sorry for the little side track, I have just been missing yall since we got home. Next we went to San Antonio to see Aunt Carolyn, we had a great day on the river and visiting with her, then on Thursday we went to Waco (104 degree weather ouch!)to see Sam's Dad and Step-mother, we had a wonderful time of catch up and then went all to Dallas that evening to see Sam's Cousin's Patrick and Krystal. Friday we drove all the way home, 16 hours straight, with three kids and a babysitter are we crazy or what! We spent this last week recovering from vacation and now are getting into the swing of summer, we do have a long weekend trip planned for this weekend to Creed, Co for some fishing and hiking, neither of these things I do well, but I am taking a good book so maybe I can catch up on my reading!
We also have been hosting a mission team from Mexico, Mo in our home this week, they are here working with our church in some of the trailer communities in the Lafayette area. We have four teenage girls and one lady, Melissa, Ashley, Shauna, Morgan and Ms. Jackie, they have been wonderful and we will miss them when they leave on Friday. They have taken to calling me Mom, I just love having them around, the kids just hang all over them, especailly Nolan. We had the entire team plus some of our youth kids over yesterday evening for dinner, wow 40 teenagers can eat a lot! We really enjoyed every minute and hope we can do it again soon. Dr. Quinones would have a fit if he know we had that many people in the house with Nolan, now that we are supressing the system again. Well I'm not telling!
Nolan is still awake so I better get him settled back down for the night.
Remember all the MPS babies and the Transplant kids. Lift up urgent prayers for Queen Maddy and her family, she is on a vent, the docs are not sure what is up. I cry buckets for the families still at Duke struggling through, how I wish there was something I could do more than just praying from afar.
Love and Blessings,
The Ramsey's
Saturday, June 4, 2005 8:21 AM CDT Summer is here but not in Colorado. Today is cold and rainy with a current temp of 46 degrees. I am sitting here by the fire sipping my diet coke(my coffee) in my flannel PJ's and thought I would give a little update. Nolan is still sleeping, the kids are entertained, Sam is working a little, so I probably have about 10 minutes before I am needed for something!
Yesterday Nolan saw the ortho Dr. here in Denver. We had x-rays and talked with Dr. Erikson about the upcoming surgery. It was decided that we can not do anything until the GVHD is under control. There is a much greater risk to Nolan's health where the GVH is concerned than the spine at this point. He said there is no way we could put Nolan in a cast the way his skin looks now. And there is no other way, we asked about a brace and he said the age Nolan is and as active as he is it would be best to be in a cast for three to four monthes after the surgery. So we go back in September and we will talk more than. We did get a lot of questions answered about our options, risks etc. We have three options, first we could do nothing and Nolan would be deformed or crippled because the kyphosis will continue to grow and we are already at 60 degrees. The next option is to fuse the vertibre as they are now and it will stop the progression of the curve, it will just remain as it is. Both of these options have low risk to the spinal cord. The third option is spinal fusion and correction, He would be placing implants, removing one really deformed vertibre, some kind of screws etc. ,this would not only stop the progresstion but correct the curve as much as possible, but with a much greater risk to the spinal cord, it could end with paralisis. Maybe the best option is stop progression now and correct later, he really didn't give that option but it might be worth asking. Anyhow Dr. Erikson left us with some decisions to think about come September. The hope is that in September the GVHD will be under control and the weather of course will be cooler. (better for his skin) I am still pushing for surgery in late december or early January. That way Nolan will get to start pre-school in the fall.
That is really all for the medical front, Nolan has regular clinic next week. Our GVHD has been out of control now since we went back to Duke and we can't seem to get it back under control. I hope that does not mean we will go back on orapred! Yuck!
The Make a Wish is still moving forward, the team will be out in July to talk about were we will go. We have almost decided on the Disney Cruise or Disney World. We still would like to go before the big surgery, so we are going to ask to go in October, the weather should be cooler and will be better for the Nolies skin. We are always thinking what is better for the skin!
We have a busy summer planned, we are making a trek to Texas for two weeks. I will be driving with the kids and our wonderful babysitter Tabi. We will be stopping first in Dallas, then on to Houston, San Antonio, Waco and Abilene to drop off Kenzie and Cooper at Camp Grammy!! Nolan is skipping again this year, maybe next year he to will go to Camp Grammy!!! Sam will be meeting up with us in Houston. We are excited to see all our old friends there. After the return from Camp Grammy the kids will do a couple of summer camps, we will then head to Creed for a little R&R ( well for everyone but me, you know camping is not my thing, at least it is in a cabin with running water and a potty) Than there will only be four weeks until school begins again!!!! I will have to see what else I can plan for the last four weeks!!!!!
Hope everyone has a wonderful summer. I will update again soon, maybe with some new pictures, wouldn't that be nice!
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolie!!!!
Tuesday, May 17, 2005 9:31 AM CDT News from Duke
Nolan, Stacey and I went to Duke May 2nd for Nolan's two year post transplant visit. I have to say going back always seems like you step through the looking glass into another world. It is so easy to fit back into that world of Doctors, sick children, hospitals and all that goes with it. It was like going home. I can not say that I would ever want to go through transplant again, but there is comfort in being in the place that we spent so much time and made so many friends. Stacey made the comment while we were there that other people really have no clue. True, it is a hard world to explain.
Anyway on with the news, Nolan saw Dr. Escolar on Tuesday, he had a great time at her office. Nolan laughed and played with all the evaluators. We just received the report yesterday, as expected Nolan rates in some cases around 17 months and in others 24 months, no big surprises there. Recomendations of course to continue with all the theorapy and add back PT. Next we saw Dr. Fitch, the orthopedic surgeon. Of coarse our appointment was at 2:15pm and we actually saw Dr. Fitch around 5:00pm. No big surprises there either, nothing ever changes there, you always rush to appointments and then wait for three hours. While we waited we met Laney Biggs, a fellow hurler transplant friend. We had never met in person only through the website and it was a great surprise to see her there, Nolan and Laney played while BethAnn, BethAnn's mother, Stacey and I chated. Laney looked so cute with her bandages on her hands, she was there to have them taken off. She called Nolan, Norman after her hairstylist. So "Norman" and Laney had a great time together. Anyway Dr. Fitch concluded that yes Nolan does need to have the spinal fusion surgery, but he thought it could wait up to a year and thought my choice of January was fine. But it will be Dr. Ericson decision. We will meet with him the first part of June. Next we went over to clinic at 5:30pm. Dr. Szabolcs was waiting for us, he had to leave out of town the next morning so we did all of our appointment in one day. Nolan was a champ he was very tired but held up well and was excited to see Dr. Szabolcs and Gill. Of course Nolan's GVHD that until the day we got on the plane was great had covered his body, Nolan was rashy from head to toe! So we were given a new medication for the skin. The hope is to control all GVH with topical meds, so we can continue to wean the steroids. Everything else was great. The next day we met up with our best buddy Jennifer, Princess Madi's family and Queen Maddy's family, we had a great dinner at on the boarders. Queen Maddy continues her fight, keep her in your prayers, they will be at Duke for atleast another six to eight months. It was great seeing you all. We did not get to make it up to the unit, Nolan had a case of the runny nose and we did not want to risk infecting the unit. So maybe next year! We told Mike and Marion to tell everyone hi and sent a picture of Nolan.
Here at home Dr. Quinones stopped the orapred for the time being, hoping that we can in fact control the GVHD with topical medications. This is a big deal. If we do get to stay off the steroids, Nolan hopfully will grow more. He is only in the 5th percintal in heigth. Another big accomplishment has been the transfer from the bottle to a sippy cup and even bigger has been the transfer from Resource to juice. Nolan has done well with all these new changes, next we hope to ditch the binkie!!!! I can not even imagine when we will ge to the diaper! For now I am happy that the bottle is gone and the resource!!! Three has certainly been a year for change and we are just getting started!!!
Next we did get the offical news yesterday about Nolan's Make a Wish, a team will soon be coming to talk to Nolan about his wish. I assume it will happen sometime this summer or early fall. This would be nice, especially if we do the spinal fusion early next year(Jan). Anyway how exciting, I almost cried. I have been a little weepy latly anyway.
I have been feeling a little down, ie sorry for myself, since my sister-in-law went back to work. I didn't realize how much I depended on her for support, she has been staying home since they moved here a few weeks after Nolan's return from Duke in August 2003. I miss having someone to just yap at during the day. I think the only adult I spoke to yesterday was the sales lady at the Gap. I really need to get out more!!! Anyway I am trying to adjust and make some new friends, Since I have been back (a year and half now) I have not had many opportunities to make new friends, but I am trying to find new things for me to do, that Nolan can come too of course. Next year should be somewhat easier if Nolan does get to go to pre-school. We went to preview the school last week and I think he will just love it. He seems very behind from those kids but I know it will do him good to be there. It will only be for two hours a day but I think it will be a great break for us both. Well enough of my pitty party.
I seem to be going on and on so I think I will concluded.
Thanks for checking in on us, I don't know how many of you are still out there , but we really appreciate your notes and prayers.
Love and Blessings
Dada, Mam, Boopa, Boo and you(Nolan speak)
Sam, Nancy, Cooper, Kenzie and Nolan
Sunday, May 1, 2005 12:39 AM CDT Tomorrow Nolan, Stacey and I board the plane bound for Durham, for Nolan's offical two year post-transplant visit. We are excited because of all the new things Nolan has accomplished over the last year. We are so greatful to the team at Duke, they brought Nolan through a very difficult medical process and we feel the the Transplant has been a great success, but is Nolan cured? Well a transplant friend of ours explained it so beautifully that I copied it for you, below Tracie Nichols explains, Nolan has a different form of MPS than Cam but many of the things Tracie talks about we face also.
"Saturday, February 12, 2005 6:00 AM CST
I received a beautiful note from one of my cousins in the mail today, and written in it was, "I'm so happy Cameron is cured and you can breathe now."
This (and many other inquiries regarding Cam's "status," has inspired me to write this journal entry...
Yes, Cameron has OFFICIALLY SURVIVED TRANSPLANT. A long and painful road for him has finally come to an end with just a trace of Graft vs. Host Disease in his skin, which is managed by smearing steroid cream all over his body after his bath each night. His immune system is functioning at 100 percent, and he is no longer subjected to the risks and fatal complications of transplant.
But NO, Cameron is not cured. There currently is no cure for Sanfilippo syndrome. Our hope is that the stem cells that were transfused into his body will stop the progression of the disease and provide a permanent source of the missing enzyme.
No one knows how the cells will work in the brain. The only way of finding out, is to wait and see. As time goes by, we will know more. Each day that passes we pray that Cam will pick up a new skill, or develop an understanding of the words we speak to him.
For now, at age 3, his expressive and receptive language skills are paralleled with an infant. He is still in diapers, and can't yet master utensils and an open cup. He doesn't scribble, or identify any objects, names, or people
(Where’s mommy? Where's your nose? Those kinds of things...).
But we have HOPE. He remains the youngest Sanfilippo child to undergo treatment, and he was a-symptomatic (no signs of damage from the disease) the day of his transplant. If this turns out to be a successful procedure, then Cameron will reap the benefits.
If it turns out that the stem cells don't go to work in the brain, then the disease will continue to cause brain damage resulting in severe mental retardation and premature death.
We hang our hope for our son on the tiniest traces of progress we see in his day-to-day life, and we pray every single day that the Will of God is to give him a healthy brain and a healthy body here on earth."
Nolan is also in the mode of wait and see, we have done our best, the doctors have done their best. We pray that Nolan will progress like a normal child, will have all the "normal experiences", but we really don't know. To us Nolan seems to be going gain busters, but to someone with a "normal" three year old development Nolan seems very behind. We forget sometimes until we see our friends who have children around Nolan's age or younger. Nolan is very compatible with Chase, my 2 year old nephew.
Nolan has started his homebound school therapy, he really likes the new teachers and they are trying to coordinate with his regular therapist to maximize Nolan's skills. He will only have about six weeks of homebound school, then he will be off for the summer, he will continue with his private therapy and we hope to start in the fall attending the preschool classroom.
Well that is all for now, we will be meeting with Dr. Fitch this week and discussing when the spinal fustion might take place. We will be having the surgery here in Denver and not at Duke. It really takes a toll on the family for us to be so far away, and we really like the doctor we have here.
Also, the make a wish foundation contacted us last week, they have started the process to grant Nolan's wish! We just need a wish now!!!! Any ideas?
Love and Blessings
Sam, Nancy, Cooper, Kenzie and the Amazing Nolan
Tuesday, April 5, 2005 8:55 PM CDT Well it has only been two months since the last update, not too bad!!! My computer has been a little crazy and still is but maybe I can get this posted before it goes bonkers.
First we have been getting all the two year post testing done here in Denver, in preparation for a trip to Duke in May. We have not gotten the results yet but do not anticipate any surprises.
We did meet with the orthopedic surgeon and now it looks like Nolan will have spinal fusion surgery sooner than later. The kyphosis has grown to 61 degrees a 20 degree increase from last May. While at Duke we will have a second opinion from Dr. Fitch. Then the docs will compare and decide. It does not sound fun, Nolan will be in a body cast for four months! Yuk!!!
During spring break we took a family trip to Disneyland! This was our first trip togather for pleasure since Nolan was born. We had a wonderful time. We played everyday from sun up to sun down. Nolan had a blast, we took multitudes of pictures and video. We meet almost every disney character and rode everything! One of our highlites of the trip was getting to see Mike, Marion and Mikey Mitchem. We had dinner several times and spent one day at Legoland with them. We had a great time with you guys and can't wait to see you again at Duke in May. Nolan did get sick while we were in California, but he has recovered well.
We past a major milestone yesterday, two years post transplant! We spent the evening with Shawn, Chelle, Hunter, Chasey, Linda, Berry, Robbie and our favorite neighbors the Bells. We had balloons, cake and watched the Video that David Slone made for us last year of the transplant. We've come a long way baby!
We will be going to Duke on May 2nd to meet with Dr. Szabolcs and Dr. Escolar. Stacey, Nolana and I will be making the trip. We will not be staying for the walk this year. The kids are disappointed but I told them maybe we can all go again next year.
Another change in the horizon is homebound school. In the next couple of weeks Nolan will turn three and then be eligable for preschool through the public school system. Because of the immune supression drugs Nolan will not be able to go to school until next fall, but we will be having additional theropy at home through the school. Nolan has been making great progress with his speech, he chats up a storm if only we could make out what he is saying!
Nolan is the joy of each day, he is truly the face of Jesus. He has never known a stranger and loves to say hello to everyone and will keep saying hello until he gets a response, people just love him. We are so blessed to be his parents. what a special child he is, I can not imagine life without him, someone recently asked if we had know before hand that he would have Hurlers would we have terminated the pregnancy. I can honestly say no, we would do it all again even if we had known, just think of the wonderful life we would have missed. However long we have with this beautiful child we will take. We live a thankful life, thankful for each day.
Love and Blessings
Nancy, Sam, Cooper, Kenzie and Nolan
Wednesday, February 9, 2005 9:53 PM CST Finally new pictures!!!!! They are really big, because I added the pics myself and I do not have the sizing thing down! So you will have to scan around to get the whole picture. But they are current shots of the big guy!!!
Nolan is doing so much better, we kicked the roto virus and clinic went well this week. Nolan went through an evaluation a couple of weeks ago for the public school and it looks like if Dr. Ralph gives the ok, Nolan will go to pre-school next year at Lafayette Elem. school. He will have homebound services in April and May of this year. We are very excited. I can not wait for Nolan to get to be around other kids his own age. We just have to get off some of these meds. We have started a slow wean once again, lets pray that we have no GVH flares during this first wean.
Well enjoy the new pictures!!
Love and Blessings
Sam, Nancy, Cooper, Mackenzie and Nolan
Monday, January 24, 2005 8:57 AM CST Today is a day of reflection for our family. Two years ago today we learned that Nolan had Hurler Syndrome, MPS I, something we had never heard of. We sat in Dr. Brickers office as she read from a text book what our son faced. The diagnosis was grim, I remember almost everything about that day. My neighbor, Andrea driving me to the doctors office after they had called to say they had a diagnosis and Sam and I needed to come to the office with Nolan at 2:00pm. I remember realizing what Dr. Bricker had really said and the tears started to well in my eyes, Winnie the Pooh was on the wall of the room. Funny the things you recall. We drove home and started to make phone calls to the family. My mother had called to let us know that my cousin Tim had been shot in a hunting accent and was in very serious condition. Could the day be any worse! Andrea had arranged for dinner to be brought in that night and she keep Cooper and Kenzie until bedtime. Pastor Dewayne came to be with us. We were so shell shocked. I called Holly and could not even get the words out, I just cried. I don't remember sleeping that night. But the morning came and we moved forward. We searched the internet. Sam's brother called and said he thought he knew someone whose child had hurlers. John called him and by Sunday or Monday we were in touch with the Harten's, Henry had MPS I also and had just returned from Duke Univeristy Medical Center. He had recieved a Cord Blood transplant and Henry's dad had already called Dr. K and told her about Nolan. Choices! We had many Doctor appointments the following weeks. Nolan had tubes put in his ears and his adenoids out on Feb 4th. Just the begining! Decisions had to be made, time was not our friend. We made the decision to go the Duke, and on Feb 21 we left for a life changing experience.
Now for the current information, Nolan has been sick with Roto virus and we spent last week in the hospital. He is getting better slowly and we hope to have it all gone be the end of the week. We had not been on the unit in nine months. All our nurses were excited to see Nolan and how well he looked even though he was sick he still looked really good. It was nice to see all of them too, but next time I think we will just drop by for a visit and not stay!! I know you all would love to see how good Nolan looks also, I am working on the picture thing!!! I will post new pictures soon or Uncle Shawn will!!!
That is all for now, thank you for your continued support over the last two years you will never know the impact you have had in our lives and what it mean to us to go out and see that people still log on and check on our sweet boy. We really appreicate the love and support.
Love and Blessings
The Ramsey's
Thursday, December 30, 2004 11:14 PM CST Happy New Year!
I hope everyones Christmas was Merry! I know ours was. Nolan is an amazing kid. First let me start by saying what wonderful Doctors we have!!!! We have a great team here and at Duke. We wish you all a Happy Holiday!!!
Nolan did great through surgery. He had ten teeth removed, three caps, one root canal and one tooth opened and sealed. We came home the night of the surgery and the next morning Nolan was asking for mini pancakes and hotdogs. He has not stopped eating since. We now know that he must have been in some real pain because he eats everything now and without teeth, he has no front teeth at all. It is really cute right now but I can't say that it will be that cute when he is eight or nine!! The Doctor thinks he will not get permanent teeth until he is at least eight. Well I guess that will be just a small thing, considering all that he has been through!
We have had a great holiday, but are looking forward to the new year. This year is going to be Nolan's year! I just know things are going to get better and better. The Lord has blessed our family so much, I feel bad asking for more, but I seek more blessings this year and for some of our friends still struggling after transplant: QueenMaddy and Jeremiah we pray for you both everyday.
Well that will be all for now, all the kids are asleep and I think I will head to bed also.
Have a happy and safe New Years eve and day.
Love and Blessings
The Ramsey's
P.S. My surgery went great too!!!
Friday, December 10, 2004 4:56 PM CST Well, I will try this again. Nolan just pushed to computer keyboard off the desk and I lost an entire update and it was really good, so this one will not be as good and it will be much shorter.
Sorry for the long laps in updates, no excuses. Nolan is great and progressing well. We thank God everyday for letting him stay here with us. We watch him run, play, dance, talk (well in Nolan speak) he is learning though and he signs some too. He says wove wou (I love you) it made me cry the first time I heard it. For in the begining we were told Nolan may never talk, walk, hear, see!!! Nolan is doing all thoses things and so much more. we know each day is a gift and are so thankful to have each moment.
Nolan will be having surgery next Friday at Childrens, he is having some teech removed. Please keep him in your prayers for anytime they put him to sleep there is a risk.
I will also be having minor surgery the following Monday, there should be no downtime and I will be back to normal the next day, but say a little pray for me too, I hate having to be put to sleep!!!
Please continue to pray for the sick little ones. There have been several friends that have lost their child recently. I am remined how very blessed we are to have Nolan to hold.
Love and blessings
Nancy, Sam, Cooper, Kenzie and Nolan
Wednesday, September 29, 2004 3:15 PM CDT Well time sure flys! Nolan is doing great. We are steady and progessing well. He has added more and more words lately, we are just thrilled even when it seems that he won't be quite!!!! He babbels on and on with mostly words we don't know but he sure knows what he is saying!!! He has some really clear words like "Thank you" "Mama" "Daddy" "Stacey" "Boo" and a couple of others. It seems like things are so normal now. Even with the meds and visits to clinic it all seems so normal. We thank God everyday for the chance of this new life with Nolan. His smile is so infectious that everyone who meets him is taken with him. He makes friends every where we go. I feel so honored to be his Mommy.
I am taking a little break, I am going on a mission trip to Brazil tommorrow. I will be gone until October 12th. This will be the longest time I have been away from Nolan ever!!! Please pray for me as I go that I will have a peace and be safe in all we are to do while we are there. Sam made this same trip back in March and came home a changed man. I pray that I can make a differance in the childrens lives there and that they can make a differance in mine. Pray for Nolan that he will remain well and thrive while I am away, also please remember Sam, Cooper and Kenzie this is the longest they have been left since Nolan and I returned from Duke.
Things have been busy the past few months, Michelle and I are working on starting a Day Spa (a dream I have had for about 10 years)here in the area. We really want to have the best of both worlds and have a rewarding career and be the best stay home mom around, and we think we can do it!!! Keep us in your prayers as we work out all the details and gather the funding we need to make this a reality!!!!
Please keep the Horton family in your prayers, Baby Jordan went to be with Jesus on Sunday Morning, after a long journey with MPS and transplant. My heart is broken for Patrick and Carrie. wwww.caringbridge.org/il/jordan
That is all for now. Continue to pray for Nolan and all the transplant kids. Thanks for checking in on us even though I am so bad at updating!!!!
Love and Blessings,
Nancy, Sam, Cooper, Kenzie and Nolan
Saturday, August 28, 2004 11:19 PM CDT Well here I am again almost a whole month later. Guess what, Nolan has C-Diff again. We just can't seem to get rid of it!!!! I thought it was gone for sure because the poops got so much better, but at clinic on Wed. we send poop off to be checked so that we could get off of contact isolation and low and behold we still have C-diff. So another round of Vanco and hopefully we will get it this time!!!!!! Other than that things are moving along well, Nolan has had a couple of sicknesses with high fevers, rash and of course poop. We thought they were just a virus of some sort but Dr. Ralph now thinks it is all GVH related. We are constantly fighting a rash and some really dry skin. Nolie seems to take it all in stride and is enjoying begining out and about some. He even made his debute back at church last Sunday. Pastor David showed the Nolie DVD that was made about his transplant and everyone was overjoyed at what he has lived through. He of course ran around the church and had a great time. We are still not doing the nursery thing, too much floating around in there. For now he will just go into big church with me each week and Pastor David says he does not mind him roaming during the sermon, everyone is just happy to have him back. We are starting to look like a normal family again. Thank you Lord for giving us this wonderful gift. Soon we will have some new pictures, Chelle has some to add but has not had a chance to put them on yet. School has started here as of Thursday and it is just Nolan and me all day. It will take some getting used to again. Well that is all for now, more later, I promise!!
Love and Blessings
The Ramsey's
Saturday, July 31, 2004 4:36 PM CDT Sorry again for not updating more often. Summer has been busy. Nolan is doing well. We have C-diff again and they think he had a virus last weekend. He ran 103 degrees for five days and had a red rash all over. We spent Friday at clinic and Saturday at ER. He is better now and we are taking oral vanco for the C-diff. We are back to once a month clinic visits for IVIG and Decluzamab. We are slowly lowering the steroids and tacrolimus. Little baby steps! Nolan is such a little toddler now, he just unrolled a whole roll of paper towels, and pouts when I scold him. We are very proud of his progress. I will have to continue this later as Nolan has discovered that I am on the computer and wants to join me.
More soon.
Love and Blessings
The Ramsey's
Monday, June 28, 2004 2:40 PM CDT Hi all! My name is Andrea Bell, and I am a neighbor of the Ramsey's. I asked if I could do the honors on this update, and Nancy agreed, although I'm sure she's wondering what I'll say.
To put in mildly, Nolan is doing wonderfully. Within the past couple of months, he's started walking, or more accurately, running, all over the place. He's talking, and getting stronger every day. He's also managed to give up eating ONLY orange food. Just moments ago, when I was talking to Nancy on the front porch, Nolan came out, picked up the watering can, and carried it over to water the flowers on the porch. When I remember just how grim the diagnosis was over a year ago, it surely is a wonderful thing to watch him move about with his chores as a toddler.
When Nancy had her surgery a month or so ago, I drove her and Nolan to clinic in Denver. It was an eye opening experience. Of course, the long waits are pretty standard, but I was really impressed with their doctor, Dr. Quinones, as well as the nursing staff. There was a few minutes during Dr. Quinones exam that Nolan was busy dumping Nancy's purse out, putting stuff back, opening the mints, putting one in his mouth, putting it back in the tin, and so forth. Dr. Quinones just watched him for a few minutes, and smiled. Then, he said, "Nancy, this is what we call a home run in my business. This is what two year old's do!"
I guess that's what I want everyone to know about Nolan; that despite some of the health setbacks they had this winter, Nolan is doing what we all wanted for him from the beginning. He is growing up.
Thursday, June 10, 2004 8:57 PM CDT Hello everyone, we are doing great. We have had some wonderful news at clinic yesterday. Nolan's immune system has started to come up. We are so thrilled. Of course Dr. Ralph said it is good but not yet good enough, so we can go out some with our mask on. No Mcdonalds, chuck e cheese or church nursery but pretty much all other places we can go with minimum people and a mask. Woohoo!!! We will take that. It feels like it has been so long. Nolan is progessing more and more everyday. We also get to stop one dose of Orapred. Yeah!!! Now Nolan only takes steroids in the morning every other day. Next we will work on getting rid tacrolimus or at least lowering it. For now all is good in the Ramsey household. Summer is here, all the kids are home ALL DAY, if I don't pull my hair out this summer we will be doing good. We have much to be thankful for, life is slowly returning to a "normal" pace. "normal" in a post transplant since. We still have PT, OT and Speech every week, but we do not have to return to clinic until July 7th!!!! Unless we have sickness!!! Praise the Lord.
Sam's 39th birthday is Sunday and I am taking him out to the Boulder Dinner Theater Friday night, we have not been out on a date in sometime. For the last six months everytime we have planned something Nolan has gotten sick and we do not get to go, So I feel confident this time we will make it out!!!!!
Thanks for checking in on us and keep praying the Lord has been answering with good health for Nolan!!!
Keeping praying for all the other transplant kids and families I just read tonight of another hurler baby that I follow that is having a very hard time, Christopher, he is about 140 days out and in PICU, stop by their site and give them some words of encouragement, it has been a long road for them. www.christopherjoseph.com
Love and Blessings
The Ramsey's
Monday, May 31, 2004 8:22 PM CDT Well, I am finally getting around to updating the site. Life has just been busy. Nolan is doing great (I almost hate to tell how great for fear it won’t last). Nolan got his port three weeks ago on Monday, it has been so wonderful. We have only had to go to clinic twice since then and do not have to return until June 9th, unless Nolan gets sick. Nolan is still testing positive for the Para flu but he does not have any symptoms anymore, we are still on isolation until we get two negative cultures back. He will be cultured again on the 9th. We have lowered steroids again and hope to go lower still in the next few weeks, however with lowering the steroids we have had to raise the tacrolimus and add decluzamab back to the mix. All of these drugs are immune suppressants so Nolan is still on the low end with the immune system. It is just important to lower the Orepred as to protect his bones and growth as much as possible, Tac is harsh on the kidneys but so far Nolan’s are looking good. Nolan’s skin is doing great so it looks like all the tweaking of the drugs and creams has worked for the time being. If we can just keep the GVH at bay and get back to a regular weaning schedule all would be well. We are still just reeling from all the great reports from Duke. Some days I even think I see light at the end of that long dark tunnel we have been traveling through. It is only flashes then it is gone but that is way better than where we were last year. I get excited thinking about the future Nolan can possibly have a future where he will be able to do normal activities and have a life just like that of his brother and sister. Nolan is progressing so well I try not to think of all the things that could go wrong, we pray without ceasing for any more setbacks, we are so thankful for the wonderful times we are having with Nolan now. He is without a doubt a toddler, we have a hard time keeping up with him, and he is in the pantry, on the table, under the bed, in a toilet, under the sink, climbing the furniture and on and on. We are so grateful to be able to get frustrated with him and learn to scold him like a normal kid. Well I seem to be rambling and need to wrap this up. Please continue to pray for Nolan and his continued progress. Also remember the other kids going through transplant, transplant has to be one of the most terrifying and horrible experiences to live through, that is if you live through it. Also please remember our friend Samantha in Houston, I hear she is doing much better but still has a ways to go; she is now going through rehabilitation.
As always thanks for sticking with us and being so faithful to check on Nolan I still love to go on and read the guestbook entries. It is nice to know there are still people out there praying for us.
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolan
Wednesday, May 5, 2004 10:31 PM CDT We are home and trying to get back into the routine. We had great News from Duke.
The MRI was significantly improved from October, Dr. Szabolcs said he has never heard the radiologist use words like significant and remarkable improvement etc. Most of the time they say slight improvement or minor improvement, the docs were major impressed.
Development studies have drastically improved, our last visit Nolan ranked about 11 months physically, 3-6 months verbally, and about 15 months with cognitive skills, Now the team that evaluated him was shocked and bubbling over with good reports, he now ranks 21-24 months physically, 11 months verbally and 21-24 cognitive. The physical therapist that did the evaluation said he was doing so much more compared to last time that she could hardly keep up taking notes!!!
The heart studies all showed improvement, with no visits required for one year.
The orthopedic studies show no change, no visits required for one year.
Vision remains unchanged if not better. (he still won't wear his glasses anymore)
The whole team was overjoyed that Nolan is walking, the therapist did not know if he would ever walk. He has been walking for three weeks and walks like he has been doing it for months.
We are so blessed and give all glory to the Lord for the wonderful things he has done in Nolan's life.
It was so good to see everyone at the Walk. We miss you all. It was especially nice to see the Mitchems, Cooper is still talking about Mikey, I can't believe how they just fell right back into being pals. I was also so glad to see Peggy, I have missed you girl!!! When you are coming to Colorado???? And thank you so much Stacey for coming with us, we could not have made it without you!!!!
We went to clinic today and Nolan is still having issues with GVH, so we are upping the dose of Tac (FK506)we hope to bring the steroids down on Monday, Nolan is still testing positive for Parainfluenza and C-diff. Monday we will have surgery for the Mediport and then go to clinic for Nasal wash, IVIG, Dacluzamab and labs (long day) I made the docs wait on labs today because of the horrible experiance we had at Duke with no asscess. He was stuck around 17 times over a three day period, he is a turnid and has no blood!!! I felt so sorry for him. We ended up pulling the picc line on the Saturday before we left for Duke and decision I lived to regret. Anyway keep praying for him to get over all these little bugs and GVH stuff or we will never be off steroids and never get back to the land of the living!!!!
I have a special prayer request, on Saturday during the Walk, I received a phone call from a friend in Houston, the daughter of some close friends of ours has had a serious head injury and is in PICU at Herman Hospital in Houston. Her name is Samantha and she is 6 years old, she and Mackenzie were good friends when we lived there. Please pray for fast healing and for no brain damage, she has several fractures of the skull and her brain is brused. Please pray for her parents Brian and Julee, they really need your prayers, Sam and I know the feelings of being in PICU watching your child fight for their lives. Hang in there Samantha, we are all praying for you!!!
Thanks for checking in and praying for Nolie.
Love and Blessings,
Nancy, Sam, Cooper, Kenzie and Nolie
Friday, April 23, 2004 11:46 PM CDT Hello everyone, thanks for waiting so nicely for information. Nolan is about the same, as far as the paraflu and GVH (graft vs. host) are concerned, the C-Diff seems a little better. Nolan did not have surgery on Wed., because he was still very congested and the Doc. decided that it would be to risky to go ahead, so we will now be having surgery May 5th for the mediport.
We leave on Sunday morning for Duke, for the one year evaluations. The whole family is going plus Stacey. Everyone is very excited, it seems funny to be so excited about going back when for six months all I wanted was to get out of there. Kenzie packed two days ago and Cooper packed today, their little bags are already by the door!!! I am excited for the Duke team to see how well Nolan looks and all the new things he is doing. It is a very special moment for us all as we take Nolan back doing so well. We all can not wait to participate in the walk on Saturday May 1st. We have many friends that are coming and it will be a sad and sweet reunion. Please pray for the families of the little angels that are returning for the walk, it will be especially hard for them.
Well it is late and I must take Nolan in to the unit in the morning to have TPA (liquid draino for lines) on his line, it stopped working tonight!!! We really need for that thing to come out!!!!! Two more weeks!!! Keep us all in your prayers as it will be a long and busy week. We pray to have lots of good things to report when we get back May 2nd.
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolie!!!!!!
Saturday, April 17, 2004 0:20 AM CDT Well we did make it home today, but 15 minutes after we left the hospital, Jodi from the clinic called and said our nasal wash came back positive with Paraflu. She said no need to come back yet, only if Nolan starts having a hard time breathing or the congestion gets bad, which listening to him now he does not sound to great. Anyway there is nothing to do except wait it out. Then about 15 minutes after the first call, Jodi called again and said our stool test came back with C-diff again. So we are starting another round of Flagyl for ten days. So please keep praying for the little guy. His birthday is Sunday and we really would like to spend this one at home. Plus Mommy is tired and needs some rest. The surgery is still on at this point but, if Nolan is not better by Monday they may have to postpone it until we return from Duke.
Thanks for checking in and keep up the prayers.
Love and Blessings
Sam, Nancy, Cooper, Kenzie, and Nolie
Thursday, April 15, 2004 12:39 AM CDT Quick up date, Nolan was admitted yesterday during clinic. He had a high white count when we came in then spiked a fever while taking his IVIG, so we bought our selves a couple of days on the 5th floor!!! I told one of the nurses this is my favorite hotel downtown, the accomidations are so nice and the staff is the best!!! Nolan is feeling better today minus the itching and runny nose, we hope to be released tomorrow, as long as nothing grows from all the cultures they took yesterday. They are giving him Ceftaz and Vanco as a precaution. The Vanco makes the GVH flare a little more cause him to be redder and more uncomfortable.
Cooper's 8th birthday was yesterday, we had a Chuck E Cheese party and Coop had a great time, Sam made it home in time for the party and Stacey came and sat with Nolan at the hospital so that I could go also. Thank you Stacey!!!
Well that is all for now, keep praying that the little guy recovers quickly and we get out of here. He is scheduled to have a port placed next Wed afternoon at 4:15. Yeah!!!!
Thanks for checking in!
Love and Blessings
Nancy and Nolie
Monday, April 12, 2004 5:56 PM CDT NOLAN WALKS!!!!!!!! He took his first steps on Tuesday, April 6th! Nana was the first to witness the event. Now he is walking all over the place like he has been doing it for years! He is so amazing. We are just in awe. Praise the Lord, he just keeps blessing us.
Happy Easter just a day late!!! I am usually late on everything! Well we had a wonderful Easter celebration with family from Texas. Sam's Mom, Dad, Sister Rhonda, Brother John and his wife Amy, My mom and brother Uncle Bubba, all came to help us celebrate Nolan's one year transplant anniversary and his 2nd birthday (which is really this coming Sunday the 18th) We also celebrated Cooper's 8th Birthday. Things have been very busy around here, but I hope it settles down a bit this week. Sam is home from his travels and we are soooo glade!!!!
Nolan is doing well, even with going back up on some drugs, the rash seems more undercontrol and he seems to feel better. We will be getting that port (we hope) this week or next week before we go to Duke for our one year checkup. That is if we ever get off these stinking IV steroids. The plan is to go back to oral this week and do the surgery after that. Dr. Ralph said we may end up with an other central line, but he really wanted to try the port first. Nolan is still have some really nasty poops, so keep praying that whatever is causing them will go away!!!
We leave for Duke in two weeks, we are getting really excited about seeing everyone and getting the reports back to see how things are going. We just got the report back from January about the enzyme levels, they are still Normal!!!! Another wonderful praise! We will be participating in the Rainbow of Heroes Walk on Saturday, May 1, 2004, this walk benefits the Duke PBMT Family Support Program, a program that meant alot to us while we were on the unit at Duke, they provide, best buddies, Artmates, Cellmates, Crisis Team, Salon Day, Community Meals, Pagers & phone cards, and much more. If you would like to make a donation in Nolan's name we would appreciate it. All checks should be made payable to "Duke PBMT - 04RH" Please indicate in the memo line the donation is in Honor of Samual Nolan Ramsey. Please mail checks to Jane Schroeder, DUMC 3350, Durham, NC 27710. All donations are tax deductable!
Love and Blessings
Nancy, Sam, Cooper, Kenzie, and Nolie
Monday, March 29, 2004 11:30 PM CST Sorry for the delay in information. Nolan came home on Wed. with IV meds and is doing ok. His GVH rash is out of control so as of today we are back on Tacrolimus and solumedral. He is very itchy and red. We hope with all the steroid creams and IV's that we will get this thing under control quickly!!! Other than a little GVH things are great! We do worry about being on everyday steroids again, Nolan had just shown signs of growth, he went from 76cm to 80cm tall and we were getting excited. Just pray that this will pass and we will continue on the downward wean. It doesn't look like we will be weaning for sometime now. We are on the one step foward ten back routine.
My surgery went off without a hitch, I did have to spend the night in the hospital, but it was great getting a little time to rest and do some super fast healing. I am feeling great, even though I can not pick Nolan up yet we are managing fine, Mom and Chelle are helping me. Nolan gives me a hug and kiss and does pretty good. Friday I should be able to pick him up again and drive. It has been a challenge,but with the awesome help I think I will make it. Andrea drove me and Nolan to clinic today and manhandled Nolan for me. What would I do without you!!!Thanks my wonderful friend. Thanks to everyone who prayed for me and Nolan this week, we really appreciate it!!!
Sam came home friday afternoon and had some Brazilian funk, so he was not feeling well at all. It was nice to see him and spend some time with him before he left this morning for Bermunda. I know it is a tough life he leads!!! The world traveler will be in New York, Bermuda, Londan,Paris and a few other places before returning home on April 7th. Please keep him in your prayers!!! Also remember the rest of us, the last few weeks have been extremely difficult with all the sickness, travel and stress we have had to deal with, please pray that we all stay well and daily life is smooth!!!
Thanks for checking in and keep praying!!!
Love and Blessing
Nancy, Cooper, Mackenzie, Nolan and Nana
Monday, March 22, 2004 11:03 PM CST Hello! It's Nolan's Aunt Chelle.
I wanted to pass along a quick update from Nancy...
Unfortunately, Nolan is in-patient again. He was admitted Sunday night due to vomiting and massive poops. In Nancy's last journal entry she had mentioned that Cooper wasn't feeling well. He had a 24 hour stomach bug that went from Cooper to Mackenzie and quite possibly on to little Nolie. The biggest concern Sunday was that Nolan wasn't drinking at all -- a big risk for dehydration. He is being given IV fluids, Vanco and Ceftaz. We are hoping he will be able to go home by Wednesday. Nancy also mentioned that his skin biopsy came back today and Nolan has mild (1-2) GVHD.
As always, there is a lot going on at the Ramsey household...smile. The hospital stays are sadly enough a routine for us now. Nolan gets admitted, we all shift schedules a bit, pray a lot and move onward to the next day! Cooper and Kenzie are on Spring break this week so we drop Nana off at the hospital in the morning to stay and help Nancy, then the kids are off to an 'afternoon adventure' until it's time to pick Nana up at the end of the day. We run pretty smoothly for the most part, but miss Nolan when he's not home with us!
Please continue to keep Nolan and the family in your thoughts and prayers. Pray for Nancy's upcoming surgery this Thursday and for Sam's safe return from Brazil this Friday.
As always - thanks for visiting Nolan's page.
Smiles,
Michelle
Friday, March 19, 2004 8:18 PM CST Well ok I did not update Wed night, but we were at clinic from 8:00am to 6:30pm!!!! So I am updating as quickly as I can. We do not have any results from the skin biopsy yet, but I am sure we will hear soon. Nolan did great with the propofal and feels petty good with the exception of the poops!! The rash comes and goes and he is getting some relief with the steriod creams. Everyday I see changes in his little personality. He is a very lovable guy, he loves to hug you when you pick him up. He is getting around great with his reverse walker and his tonka truck, the truck has storage in the seat that he likes to put cheese nips and his bottle in, if I can't find the bottle I just go find the truck and look inside and there it is! We are still making plans for his one year transplant party coming up easter weekend. His actual one year anniversary date is April 4th, but Daddy won't be home yet so we are celebrating Easter.
Sam left on Wed and has arrived safely in Brazil, thank you for the prayers and keep praying for his safety and for him not to come home with any viruses. He will be coming home next friday afternoon.
This week we had a wonderful treat, some friends of ours from Katy, Texas, Guy and Lesha came to visit. It was great to have them here, it almost felt normal around here again, without clinic days that is. The kids had a fabulous time with their girls, Rebecca and Jackie. They are the exact ages as Cooper and Kenzie, in fact Guy and Lesha were in our child birth class when we first moved to Houston eight years ago. Thanks guys for all the help you were to me this week, it was such a blessing to have you here especially when Sam left. Miss you already.
Nana will be coming tomorrow, and staying for the next three weeks. It will be such a help when I have my surgery next week. The kids are excited and I think it will help keep there minds off Daddy being gone for so long. Sam will only be home Friday afternoon thru Sunday night, then it is off to Europe for two weeks.
I did all my pre-op testing today and I am ready for Thursday. I am the first on the list that day and hopefully will feel like coming home by that evening. I was told most people stay over night so I am preparing for that also. Chelle and Nana will be in charge and I know they will do a great job with the kids.
Cooper has not been feeling well today and is running a low 100 temp, I hope we are not in for another ER run! That is all I need. Please keep him and the rest of us in your prayers. My nephew Chase also has a severe ear infection and has not been sleeping well, it seems that we are all falling apart!!! Just cover our family in Prayer we would appreciate it!! A praise for the week is that Kenzie is feeling much better and back to her old self. I really appreciate all the guestbook entries you all are so sweet. Thanks Anne you are always so good to keep up with us!! love you.
"Have mercy on me, O God, have mercy! I look to you for protection. I will hide beneath the shadow of your wings until this violent storm is past." Psalm 57:1
"The Lord is good. When trouble comes, he is a strong refuge. And he knows everyone who trusts in him." Nahum 1:7
Love and Blessings
Nancy, Cooper, Kenzie and Nolie
Tuesday, March 16, 2004 2:37 AM CST Just a quick update, I am up with my silly gallstones so to take my mind off the pain I thought I would update. Next week after surgery I am sure I will have other kinds of pain!!!
Anyway our week last week just seemed crazy! Thursday Mackenzie came down with pnuemonia and I spent all evening with her in the ER, the docs decided to put Nolan on the same antibiotic as her to prevent him from getting pnuemonia again. Then on Friday Nolan took another trip to clinic because he had seven poop diapers in two hours, not usually a good thing, They cultured the nice sample I brought in and he now has C-diff (an intestinal infection) along with his Adeno virus. He is also having a hard time keeping his potassium in balance it was extremely low on Friday and again today, so he has been getting IV's at clinic both days. This infusion is a long one and we have spent all day at clinic Friday and today. We do not have to go tomorrow, but return on Wed. for IVIG, a lumbar puncture, skin biopsy and EKG. It will be a busy day! Nolan's rash had improved over the week last week, but it came back with vengance(he is very itchy again and his skin is breaking down) on Sunday, so that is why they are taking a skin biopsy to see if this is GVH. If it is the wean is over and we go back on Tac and decluzamab. Dr. Giller did say we won't go up as far as we were when we came home, but they feel we have weaned too quickly. As I always say one step forward ten steps back. Nolan has been a little trooper having to spend all his time at clinic, the nurses all say he will be a doctor someday because he likes to play with all the equipment, and he just loves the hospital, I think he thinks we live there!!! I know a lot of the staff think that! We will not be taking the Pic line out because of its frequent use lately and in a couple more weeks we will either be getting a broviac or a port! I am glad about this because I was worried about have to stick Nolan so much. If he is still having to be accessed more than once a week we will be getting a broviac, but if we get back to once a week visits we will get a port. Also the teeth issue has not been decided. We are waiting for a time that the teeth can be pulled safely in the OR. It may be a little while, but it looks like many things will be going on while Sam is away.
Speaking of which Sam will be leaving for Brazil with the mission group on Wed morning. Please keep them in your prayers, there is a very bad virus going around in Brazil in the area they will be visiting and we do not need anything else coming in this house!!! I am very nervous about him leaving and will miss him so much, especially next Thursday about 7:15 am during my surgery. I have debated again about putting the surgery off so that Sam could be home, but nights like tonight make me glad it will be done soon. Just pray that things go smoothly and I recover quickly, I don't really have time for this!!!!
Well this turned out to be a longer update than I thought! I will try to update again after Wed clinic. Please pray pray pray for our family! We just keep smiling and pray that someday soon things will settle down!
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolie
Wednesday, March 10, 2004 6:24 AM CST Well a lot has been going on this past week since we got home. We came home with that rash and it proceeded to get worse, so we took a trip to clinic Monday morning so the Docs could take a look at it again. It could be three things, first and most not wanted is GVH of the skin. (GVH is graft vs. host, where his new cells start fighting his body, for those of you that need a little reminder) The second thing it could be is an infection and last it could be a drug reaction. We are hoping for the drug reaction and have moved around some meds in hopes of clearing the rash. We have started a steroid cream to help him with the itch and round the clock benadryl. This seems to help keep him comfortable. We go back to clinic on the 17th for cultures, spinal tap, IVIG, chest x-ray, echocardigram, and hopefully to pull the pic line. The line has not been behaving well. I am still nervous about not having a port or line of any kind, I just can't see where sticking him will be better. Bart, the PA at clinic seems to agree with me and said we will talk to Dr. Ralph again next week about a port. We are still on a six hour IV antibiotic schedule and Sam and I are taking turns staying up late to do the midnight run. We hope soon things will settle down again.
Sam will be leaving next Wed the 17th for a misson trip to Brazil with our church and will be gone until the 26th, he will be home for about two days and leaves the 29th for Europe for two weeks!!! During this time I have schedule surgery for myself, I have a gallbalder that needs to come out and can not seem to find a time to have it done so I am just winging it and having it done on the 25th, life is so complicated sometimes. My mom will be here to help, but I still worry because she is not in the best of health and taking care of my children is not an easy task even for me sometimes. Please pray that this all works out and everything goes smoothly. I will have to be down for about a week or two, not lifting Nolan!!!! So please pray for him that he will be happy just sitting with me and not walking around or climbing on me.
Another change in our home has been Ana Carla leaving. She decided, while Nolan was in the hosptial I might add, that she would go live with another couple from our church. It was a surprise and shock to us, throwing our lives upside down once again, but we are rubbery and bounce well. We wish her well and hope she finds what she is looking for. This leaves us with some babysitting issues and makes my life a little harder for a while, so if anyone knows of a babysitter that could deal with Nolan's issues please let me know. I do not think we would want someone that lives in, that is just too hard and I think we are done with that, but some one that could come one or two days a week or one evening would be great. I abuse Michelle all the time and feel bad that I leave my kids over there and can't really help her out much. Anyway God was so good when he assigned Sister-in-laws!!! I love you Chelle.
Well that is about all the news in Nolan's World. Things are moving along and around Easter we are planning a big celebration for Nolan's 1 year transplant anniversary and his 2nd birthday. All the family is coming from Texas so watch out Colorado!!!!!
As always thank you for checking on us and keep praying we will really be needed the prayers over the next four to five weeks!!!!!!!
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolie
Wednesday, March 3, 2004 6:15 PM CST We are home!!!!! We got out yesterday afternoon, I just have not had a chance to update. We came home on Vancomicin IV every 6 hours, which means I have to get up at midnight and run an hour med and again at 6 am, so sleeping is short these days. Nolan also has a rash(a result from the other antibiotic he was on Fri - Tues, we think) It is red and itchy. Since coming home he has started a low grade fever again, which seems silly since he is already on an antibiotic. It seems that he just can't get well. The Docs are talking about pulling the pic line next Wed in clinic and not putting a port in unless it becomes manditory. They will have to stick him for IV's and blood draws, but Dr. Ralph thinks this will be lower risk of infection for him. I can not hardly think of how he will react to being stuck!!!! For the most part he is doing ok, he has been a little grumpy today, but who can blame hime with that rash all over his trunk and neck.
Keep praying, we are approching our one year mark and want to be on the track to better days by then. Thanks for checking in and praying.
Love and Blessings
Nancy, Cooper, Kenzie and Nolie
Monday, March 1, 2004 1:17 PM CST We are still hanging out in the BMT unit here at children’s. Nolan is still doing well on the antibiotics. His culture did grow some bacteria so now we are waiting for the bacteria to have a specific name. They have to name it so we can treat it with a specific antibiotic, so we will stay in patient until then, hopefully tomorrow morning we will go home. Sam will be going out of town early tomorrow, so we probably won’t see him before he goes. The kids can not come to visit in this unit because of the hard flu and respiratory season, they have restricted sibling visits. So he will be with the kids tonight and then hopefully I will be home when they get out of school. It sure takes a lot of coordination to make sure everyone is covered.
We are having a problem with Nolan’s pic line, it keeps stopping up, we had to unstop it for the second time. It seems that it will not be with us much longer. We anticipate having to pull it as soon as we are finished with the antibiotics, we just need it to work until then, then maybe we can finally get the port placed. Please pray that the line holds out a while longer.
Thanks so much for the prayers and guestbook entries, it sure helps when you are just sitting here in the hospital. Also thank you thank you Aunt Chelle for feeding my family and making sure my kids have a place to go, while we are in here!!!! You are my angel!!!!!!
I would also like to send a few thank yous to some friends in Houston, I thought I would actually send out cards but with the events of the week I again have not been able to do so. Anyway, Thank you Deb for the beautiful tea pot, it really made my day!!!! Thank you Cheryl for the feathery purse and for the ride to the airport! Thank you Barrera’s for Dinner. Thank you Susan for the great lunch. Thank you Holly for the GWTW purse, pocket heart, belt, star, cup, cross and for the wonderful stay. You are the greatest!!! I miss you all and hope to see you again sometime soon.
Please remember all the other sick kids and their families, it is so exhausting living in and out of the hospital.
Love and Blessings
Nancy and Nolie
Saturday, February 28, 2004 8:20 AM CST Well here we sit again on the BMT unit. Yesterday morning about (4 am) Nolan woke up with a fever of 102. In bone marrow land this is high and calls for immediate attention. So I called in to the Doc on call and she wanted us to be at clinic as soon as they opened (8 am) so we didn’t have to go through the ER. We had cultures and x-rays and they started an antibiotic, then after seeing the high white count and fuzzy spot on the x-ray we were invited to stay for a few days!!! They are treating Nolan for pneumonia. He already looks tons better after 24 hours of antibiotics!! No more fevers so we hope we will be out of here Sunday or Monday. Nolan just threw his fruit loops all over the floor; I don’t think he realizes that there are no more!! (Until Dad comes that is) It is very hard to entertain an almost 2 year old in a 3x2 crib; it was much easier yesterday when he slept all day! The game today is how much stuff can he throw out of the crib and watch mommy pick it up and wash it. Anyway the Docs are not sure yet what or where this infection is coming from, we have many choices, bacterial, viral, fungal, I think they hope for bacterial so that the antibiotics will work and it seems to me that may be the case. Pray for this to be resolved quickly. Anytime Nolan gets something respiratory I get a little nervous, I don’t ever care to see another ventilator and that is what I fear if this gets out of control. Nolan and I both slept well him in his crib for the most part and me in a recliner, it really is comfy when you are tired. I even kind of liked having this silly yellow gown on, it was a nice blanket. I am trying to be very positive about our visit and pray that we are healthy again soon.
The kids seem to be doing ok with everything, thank God for Aunt Chelle and Uncle Shawn, they have been life savers, I think it helps the kids so much. I know it helps me. I sat last night just thanking the Lord for providing family so near to help us. What a blessing they have been.
Well I will try to update with more info tomorrow, we should be hearing from the cultures sometime today or tomorrow.
Thanks for checking and the prayers!!!! Especially the prayers!!!!!
Love and Blessings
Nancy and Nolie
Thursday, February 26, 2004 10:24 AM CST Hello all, it is great to be home. I had a wonderful time in Houston seeing all of my old friends. It was a much needed rest and time to recharge. I am so glad to have gotten to spend time with so many of you while I was home ( someone asked me where home was and yes Houston is still home in a sense) but I did not miss the weather one bit, my hair seemed to take on a life of it's own and grew outward about a foot!!!! I really appreciate Holly and her family allowing me to invade there lives for a week (especially Briliegh for letting my use your room) I stayed a little longer than originally planned and did not return until Tuesday evening. But I am glad to be back with my family.
Nolan is still battling the Adeno virus, so that means a lot of poop and sometimes a little vomiting. But he seems to feel a little bit better and is playing more. We are waiting for a negative culture to proceed with the port placement and to have his teeth removed. Hopefully we will get that done soon, before Sam leaves for his big trip. Some how it looks like this will all happen while he is gone for a month. We are still on weekly visits until the virus clears, but hope we get to go back to every other week soon. Nolan is still weighing in around 11 Kilos and 76 cm in length, this is the same heigth and weight we went to Duke with one year ago this week. At least he is holding steady!!! I can not believe it has been a year since I packed up and left my home for places unknown. What is the old saying if I had know then what I know now!!! I honestly believe I would not have changed a thing, If I had known I think it would have scared me to death. The Lord took such care to guide me along and place me in the path he wanted me to go, to meet the people we met, to see the things we saw. My heart has wept so much this year and changed me, I hope for the better. I still remember all the sweet children that have gone to heaven and their families that touched us so. I pray that sometime soon Jesus will return for us all and there will be no more MPS or cancer or any other disorder that takes these little ones.
Thank you for checking in and continuing to pray for us.
Love and Blessings
Nancy, Sam, Cooper, Mackenzie, Ana Carla and Nolie
Monday, February 16, 2004 10:06 AM CST Sorry for the delay in news, but thank you so much for the prayers and well wishes. Nolan is feeling much better and we think has kicked the "bug" once again. At clinic this week he looked so good we continued the wean of steroids and blood pressure meds. Things are looking good and I feel that we will be living in the real world again soon. Nolan is acting more and more like a 22 month old!!!! Yeah!!!! He is walking around the furniture more and more and we think will let go at any time!
We do have to have his front two teeth removed in the next couple of weeks (the nerve is exposed) and we still have to have the port placed, spinal tap, and echocardiagram, so when I return from my much needed trip to Houston we will be scheduling these procedures. I leave on Wed, Feb 18th and return Sun, Feb 22nd. Please pray for no rain(Nolan rain that is).
I will update agian when I return.
Thanks for checking.
Love and Blessings
Sam, Nancy, Cooper, Kenzie, Ana and Nolie
Tuesday update!!! Really quick almost moments after I updated yesterday Nolan started throwing up, he seemed to feel bad all day and was sick on and off. This morning he is still not feeling well and before I could call the clinic to report on him yesterday, Bart our PA called and said his culture has grown from last week with Adno virus, so that at least explains why he is still sick, he will go to clinic tomorrow for IVIG and a check up and they will run more cultures. Keep praying!!! Sam says I am still going on my trip!! We will see!
Love Nancy
Sunday, February 8, 2004 5:02 AM CST Well things are not yet back to "normal" after our stay at Childrens. Nolan has now had a virus (throwing up and massive poops - we have a lovely orange spotted carpet now)for the last two weekends and we have spent a good deal of time at the clinic, Thankfully we were not admitted and were allowed to do home IV's instead. We are running 12hours of IV at night to help support him through this virus, it is an unnamed virus at this point. We ran an antibiotic at Clinic on Thursday and Friday to cover just in case of infection. If there is no inprovement by Monday he must go in to clinic again! We do our regular visit on Wednesday so maybe he will be ok until then. My car goes on auto pilot to the children's hospital and I just nap on the trip!!! I wish!!!! The last couple of weeks have been a little lacking in the sleep department, but I am hoping for better days in the near future. Please continue to pray for Nolan and our Family. I will try to report again soon.
Thanks for checking in and signing the guestbook!!!
Love and Blessings
Nancy, Sam, Nolan, Cooper, Mackenzie and Ana Carla
Monday, January 26, 2004 0:23 AM CST Sorry for no update on Friday or Saturday, getting the little guy home has put us once again in full swing with homecare. Nolan is doing great, he is feeling ok, not great. He is taking his IV antibiotics at home (Q8)or for the normal person every eight hours along with his regular twice a day IV, we are up to twelve orals again!! Wow one step forward and 10 steps back!!!!! We are not complaining, although you should have heard us Friday when we got home and could not figure out the new PIC line, at the hospital the caps are different, so I had to change it when we got home only no one should us how to care for the silly thing and I was a little overwhelmed with all new meds and new line. So I had a little break down, feeling the pressure of the week, had a good cry, told Sam I am not a nurse and have no real desire to be one, then I felt much better and we finally figured out how to make that silly line work, by this time we were an hour late giving the IV, so we were up until 1am. We than had to be up again at 6am for the next round of drugs!!! I am now feeling more confident and think we will survive the PIC line. I am now waiting for the last med to finish so I can go to bed, but thought I would update while I wait.
Sam is in New York this week (where I was supposed to be this weekend, I am not bitter! just disappointed) Sam says I can go next time!!! Anyway he called this evening and reported a bone chilling 15 degrees, of course we are also 15 going to about 8 degrees tonight but it is a different kind of cold! Colorado Cold is nice and dry!!! making it not feel near as cold. We do have a nice layer of snow, it snowed all afternoon and into the evening. I love the snow, I missed so much of the snow last year that I am enjoying every moment! I spent some time in reflection this weekend, Saturday marked the one year point of Nolan being diagnosed with Hurler Syndrome. I can remember every moment of the day and every feeling. I can safely say that was the lowest point in all my life. The words of our doctor ring in my ears even now. Yet here we are one year later with a guarded but somewhat positive outlook. The Lord has blessed us so, and given us so many opportunities to be a light for him, he has used us beyond anything we could have imagined for ourselves. We have been bent, stretched, torn, pruned, I have grown more in the last 12 months than I have in the last 20 years. I know there is still more bending , stretching, tearing and pruning to be done and we are willing. Sometimes we feel tired like we can not go on,that we will never be off the roller coaster, that the fear will never go away, our lives revolve around the needs of Nolan and sometimes thoses needs are overwhelming, but the Lord says "come unto me and I will give you rest". I pray for a renewing as our journey continues.
As always thank you for checking on Nolan and for the prayers.
Love and Blessings
Nancy, Cooper, Kenzie and Nolan (Ana Carla too)
Friday, January 23, 2004 0:38 AM CST Just a quick update on the little guy. Nolan did have his line pulled this evening and they placed a PIC line for the time being. He did very well with the sedation and was sleeping comfortably when I left the hospital a little while ago. Daddy is doing his time tonight so that I can get a little sleep. Yeah Daddy. Nolan will probably have the PIC for two or three weeks, then we will probably go back to another central line rather than the port. We have to clear the infections first, so we will be coming home on a couple of antibiotics to run at home. We hope to bring him home tomorrow (Friday) or Saturday. So much for every two weeks at clinic, we will be going every week again for a while. Nolan seems to be feeling better and better each day and soon will be back to his old self beating his head on everyone.
We also had a few other procedures done while under sedation tonight. Nolan had lost one of his tubes, so the Doctor just popped out the one that was still in and replaced them both, after that procedure he had an ABR test(this test the brainwave responses of the ear, or something like that) We have had this test before with not very good results, infact the results stated that Nolan was basically deaf in one ear, but the results we received tonight were all in normal range. What a great praise! Nolan also had an eye exam while he was out, this is the best way for the eye doctor to check his retinas and take some photos of the insides of his eyes. She also had great news for us. From what she saw the retinas looked normal and his clouded corneas looked better. We are really singing some praises tonight. It looks like thoses new cells have really kicked into high gear and kick that hurler syndrome all over the place. Praise God for Cord Blood Transplants, I don't know where we would be now without it!!!!! Surely not here. The outlook for Nolan gets better each and every day. The risk was high and we knew it was the only way and God has allowed us to make it this far, we are so very thankful.
Give your kids a big squeeze and tell them you love them.
Love and Blessings
Nancy, Sam and Nolie
Tuesday, January 20, 2004 11:20 PM CST Well as I have said we would go back to daily updates as the need arised. Nolan was admitted this morning to the hosptial with an infection in his line and around the site. We were told the infection around the line is near to impossible to get rid of without pulling the line. So now there is talk that the line will be pulled this week. Then he would have a temporary access (pic line) until things settle down in his system then they would place a port in his chest. We are ready to get rid of the line, my only concern is pain that Nolan will have to go through with each access of the port. Anyway things have been busy the past few days, we made a trip to Children's Sat, Sun, Mon. and then again this morning to stay. Nolan has been feeling pretty miserable for a few days and not his usual self. We are so greatful that we finally know why he has been running that low fever and having a puffy, ozing site. We started two antibiotics, Vanco ( the lovely redman drug) and merapinum ( not the correct spelling) but for the next little bit we are back to running many drugs over the day and night. I hope to see the little guy laughing and banging his head again very soon! I will update again tomorrow when I have had more sleep and have more information!
Special Thanks to Stacey for spending the entire day with us today, it would have been a very loooong day without you!!!!
Please pray for a quick recovery and that Nolie feels better soon. Also pray for Kenzie and Cooper, they seem to have a harder time when I am way with Nolan at the Hospital, their little lives have been so up and down I can not help but feel they need the extra pray and grace.
Thanks for checking in and praying for us.
Love and Blessings
Nancy and Nolie
Wednesday, January 14, 2004 10:27 PM CST Again time has slipped away and here we are with almost a month in between updates. Sorry, as always Nolan keeps me running with no time for the computer. He is digging in a trash can in the office as I write. He has become a wonderful almost two year old. In to everything he can get his little hands on. We are having the battle with the stairs, so we are going to gate him into the family room. Nolan's health seems good, he is having a low grade fever that has not been pin pointed yet, but all the test have been negative. We pray that it is just teething!!! Nolan took another step towards getting off all the at home IVs, we started taking oral mag & potaccium, eliminating the two hour IV that ran every afternoon. He is tolerating the new meds well and we hope to rid ourselves of the IV vori that runs once in the morning and once in the evening, in a few weeks. Than Nolan would only have IVs at clinic once a month.
Other Nolan news is that we were scheduled to do our nine month post transplant testing this week at Duke, but because of the flu and a few other travel problems we have decided to do all of the nine month test here at Childrens. We should be starting them sometime next week. Please pray for Nolan as he goes through these test, some of them seem painful and I am sure not very comfortable for him. Anyway we should have results in the near future. Our next trip to Duke will be April 25-May 2, 2004 we plan to do our 1 year studies and attend the Rainbow Walk.
Sam has suprised me with a weekend in New York, January 23-25, this will be the first time for Sam and I to be away together in a long while. He is so sly, he arranged childcare without my knowledge. I am sure I will spend some time with the old worry hat on, but I plan to enjoy every moment of "us" time I can get. Sam will be traveling a lot over the next few months so I think he wanted to give me a little time away before he leaves on his trips.
Well that is all Nolan is going to allow for tonight, he is hitting me indicating that he is ready for bed.
Love and blessings
The Ramseys
Friday, December 19, 2003 11:43 AM CST Making a quick update today, I wanted everyone to know how well Nolan is doing and progressing. We have all stayed healthly so far and give praise for that. We have moved to every other week visits at the clinic!!!! Nolan is standing and walking some in his walker. He is saying dadada, and other undistingished sounds. He has climbed the stairs to the top four times and tries to do this when no one is looking on a daily basis!!! We are so proud of all the new things he is doing everyday. We are looking forward to a quiet Chirstmas at home and giving thanks for our second chance of a wonderful life with Nolan.
I am excited about the new year and watching Nolan progress, but at the sametime heartbroken at all the sweet childern we have seen leave here this year. I wanted to take a minute and tell their families how much each one of them changed my life. I will never forget their little faces. I know this season will be the hardest for the families left behind and I pray for each one of you daily as you go through this time. Please remember to pray for the families of: Reese, Ryan, Kyndal, Madi, Manny, Jose David, Juan, Douglas, Tommy, Hermes, Arostophnis, Noah, Jillian, Taylor, Travis, Isobella, Max, Mckenzie, Brittny
Each of these families touched our life for a brief moment, yet their impact remains with me. I love you all and wish you comfort.
Merry Christmas
Love and Blessings
The Ramsey's
Sam, Nancy, Cooper, Kenzie, Nolan and Nana
Monday, December 1, 2003 4:25 PM CST Happy Thanksgiving!(only a few days late)
I had planned an update on Thanksgiving, but did not get to the computer, we had Grammy and Grandpa and Aunt Rhonda visiting and the week just got away from me. Nolan is doing really well, we have avoided the flu so far!!!! On Wednesday’s visit his white count was elevated and they cultured everything and so far nothing! As long as he stays well this week we have graduated to every other week clinic visits!!!! Can we have a WOOHOO!!!!!!!!!! This is a big step! I hope soon we will only be having to go in once a month! That will be a major accomplishment. Well here is some more good news on the Nolan front, He started saying dadadada just a few days before Thanksgiving and he is pulling to stand on occasion, walking in his walker unassisted( about 5 steps) and seems to be feeling better than he ever has! Praise the Lord for he is Awesome!!!!! He is slowly giving us our baby back! Andrea our neighbor was here on Friday and she commented on how different he is looking, different being that he looks more normal than he has in months, I am planning to update the pictures soon, I just have to figure out how to do it!! Hint, Hint Uncle Shawn!!!!
V bn ccccccccccccccccccccx Wow, sorry there, Nolan got the keyboard and wanted to say hello.
We also added another angel to the list this week, Max flew home to Jesus on Wednesday, please keep his Family in your prayers www.mighty-max.com Also keep praying for Tommy’s family www.caringbridge.org/ca/bennettboys , both families will be burying their sons on Tuesday. As one of the other hurler moms said on her site this disorder SUCKS!!!!!!!
Thanksgiving had a new meaning this year as will Christmas. We are so blessed to have Nolan with us, to hear his new words, to hear his giggles, to see his million dollar smile, to watch him take steps in his walker, to hold him close and feel his tiny arms hold me tight and on and on. What a gift we have been given. We are so Thankful for two older children who selflessly give to their baby brother and pray for him without being told to, sometimes tears just fill my eyes as I listen to Cooper and Kenzie pray, never do they forget to pray that Nolan will get better. We are thankful that Shawn and Michelle moved to be near us, a true God thing. We love having them so close and it is nice to have family dinner every week. We are so thankful for the wonderful friends and neighbors we have. We are thankful for Ana Carla (who is going home to Brazil for Christmas on Friday and won’t be home until January 15th) My blessings have been so many this year I hope no one has gone unthanked or unnoticed. My cup runs over with love and blessings! A dear friend of a sweet little Angel always ends his updates on their website Go hug your kids, so I wanted to add in honor of the Mitchem family
Go Hug your kids!!!
Love and Blessings
The Ramsey’s
Thursday, November 20, 2003 11:27 AM CST (update as of Nov 25, Another MPS Angel has taken flight, Tommy Bennett gained his wings early this morning, Our hearts are broken for them, Alica is such an encouraging person to all of us with MPS children always checking in and leaving kind words even when things are not going well in her own camp. Alica you are my example of a great Mom. Please stop by their site and leave your words of comfort and prayers. www.caringbridge.org/ca/bennettboys)
Day T 230
Nolan is doing well. We had our Wednseday Clinic yesterday and things look good. Our labs were good, even the liver test are starting to look normal. Yeah for Nolie! We have a bit of a worry, Nolan and our whole family was exposed to the flu on Monday, Ana Carla our Nanny came down with it on Monday afternoon. Nolan has had little contact with her and she has gone to a friends house for the duration. Dr. Giller prescribed a preventive dose of Tamiflu for the family but the Pharmacies are all out of the medication. So we are just praying that we all stay healthy. Dr. Giller did say if Nolan does come down with the flu he will probably be admitted to the hospital. He has already had some congestion and having some difficulty sleeping at night, I can not imagine how he will deal with the flu.
But he is in God's hands and I pray daily to leave him there. I have had a hard time with fear of Nolan getting sick and Sunday I placed Nolan back where he belongs, in Gods hands. It was much easier for some reason when we were at Duke to let God take care of it all, when we came home I seemed to have snatched Nolan back and tried to protect him myself. God has been so faithful to us and how dare I think I am better at taking care of my son than he who gave him to me. It is a difficult thing to do and I have to hand him over daily. My burden is so much lighter knowing that I am not in charge!!!!
We are so blessed to have Nolan in our lives, he has changed us in ways I can not put to paper. One little life so full of joy, even through some of his worst days. I have learned much and I thank the Lord for bringing Nolan and Hurler Syndrome into our lives for without it we would not have met so many wonderful Godly people along the way.
Please be in prayer for another hurler family in Minnisota, Max, he is at day 98 and been in PICU for a very long time., things are not looking good, but his family is not giving up and we pray with them for healing. www.mighty-max.com
Since my last update, we have lost another of our transplant friends from Duke, little Manny had ALD and became an angel a week and a half ago. We extend our love and prayers to Stephen and Melissa as they face life without Manny.
We have watched 14 of our transplant friends become angels and there are so many more that we did not know, please remember the families as we head into the holiday season, I know this year will be most difficult for them and my heart breaks for each of them. I pray for a peace and strength from the Lord.
As always thank you for checking in on Nolan.
Love and Blessings,
The Ramsey's
Wednesday, November 5, 2003 5:54 PM CST Today was clinic day! Our weekly journey to Denver Childrens Hospital, it is a wonderful hospital, with some really wonderful people who work there. I say it all the time it takes really special people chosen by God to work with these very sick childern. We have been so blessed over the last few months, Nolan is making progress by leaps and bounds!!!! We are continuing to wean the steriods down with no problems. Dr. Ralph gave me the tentitive schedule for the weaning of the drugs, if all goes well, he hopes to have Nolan off most everything sometime late spring or early summer, if all goes well!!!(he added that part at the end when my eyes lit up and a huge smile crossed my face, it is hard not to get excited, but I understand that it could all change in a heartbeat) We continue to pray that our little miricle will stay healthy throughout the flu season. Nolan's Physical Therapist Melissa feels that Nolan will be walking by January if he stays well!!! Everyone always tags that phrase on at the end!! We all had our flu shots and are excessive about hand washing. The rest is up to the Lord and his plan for Nolan.
I have had some difficulty over the last week with the lose of our sweet little friend Princess Madison. Madi just loved Nolan and I can still hear her little voice saying his name "baby NOOOLan" We will never forget the Mitchem's and all they did to help us out while at Duke, The vision of Madi crying at the airport as Nolan and I left to come home will live with me forever. Marion called a few hours later to see if we got home ok and told me Madi was crying at the airport because she missed "baby Nolan". What a sweet caring little princess. We will never forget! We love you Mike, Marion and Mikey!!
I have been missing some of you on the guestbook, It really does mean a lot to read the entries even when there is not alot going on. Nolan is doing well and we sing Praises for that, but he still needs the prayers and so do we for that matter. Sometime the stress comes crashing down, I miss the constant feeling of being lifted up in prayer by so many friends. I know we have not been very good about updating and we are trying to do better, but it just seems to always fall to the bottom of the list of the never ending things to do. We appreciate all the love and prayers we have been shown on our journey and we continue on the journey everyday.
Oh, I almost forgot, we got test results back about Nolan's enzyme levels and he now has normal enzyme levels!!!! Praise God again for this wonderful news. This means to me that the Hurler has been stopped!!!! If they were to test for Hurler his levels would be normal!!!!!!
As always thank you for checking on Nolan.
Love and Blessings,
Nancy, Sam, Cooper, Mackenzie, Ana Carla and Nolan
Sunday, October 26, 2003 11:42 AM CST Hi all,
I just wanted to give everyone a quick update of how things are going.
Nancy returned home safely from Canada after a much needed break away from it all. She really had a great time and said she got lots of rest. What a big praise for her too take a break and a big relief for her to be home!!
The following week Nancy turned around and went back to Duke for Nolan’s six-month checkup. Mackenzie and my mom went with her. Thanks mom and God Bless for helping out. I hope the whole “doctor and hospital” thing was not too overwhelming.
Well they all returned home safely and the tests went very well. Nolan’s counts are all still very good and he just keeps plugging along!
He still has a very low immune system, which should be a little higher than it is but that is attributed to the drugs. One big thing we are working on now is weaning the steroids. Although a necessity short term they really do have some significant long – term consequences if taken to long. So far so good on weaning. The last time we tried he was in the hospital for a week. He has been fine for over a month now. Praise God for that!!!! Please pray for us as we get into the cold and flu season. Pray for protection for our family against sickness!
We are also discussing the pressure issues on his brain, which are a bit high. The doctors at Duke, Minnesota and here in Denver are all consulting on whether a “shunt” is necessary. I have no idea if that is spelled correctly? Although he really does not exhibit some of the symptoms of high pressure, they are concerned about affects on his eyesight long – term.
His heart showed a few thickening points. All very consistent with his condition. Very little, if any problems, short and long – term. It is pumping strong!!
Other than that is he has better range of motion in arms and legs and we are waiting for the day he talks and walks. He is now trying to pull up on tables, etc.
Sounds like a bunch of stuff but in all the above we will keep plugging along. We will consult with doctors, pray a bunch and make the best decisions and take the best directions we feel God is leading us. Then we will “chunk it” back in Gods lap because it is way too much for us to handle alone!! We don’t know the future, but we know one way or the other God will be in it.
Well that’s about all. Please keep praying for Noah’s family and their loss. Also please continue to pray for our family for peace, wisdom and discernment that only comes from God, as we tread through the medical world, while attempting to raise the rest of our family at the same time!
God Bless!
Sam and the rest of the bunch
Thursday, Oct.30, 2003 - Just wanted to ask for prayers for our good friends the Mitchem's, Madi transplanted with Nolan at Duke and lost her battle Late Tuesday evening. Please stop by their site and give them some words of comfort. www.caringbridge.org/nc/princessmadison
Monday, October 6, 2003 9:12 PM CDT Well, I know it has been a long time since the last update! Not that we have not tried, Nancy actually did an update a week ago that took her an hour. She went to post it and she lost the entire thing! Well, I have only lost this entry once and I am going to keep on typing.
Today comes with mixed emotions as I have been reading several websites and learned about what little Noah and his family are going through. For those of you who know Noah and even those that don’t, please pray for little Noah and his family. As I put in their website, words cannot come close to expressing the pain and sorrow that comes with watching your child suffer. I have never experienced anything in my life like the journey Nancy and I have been on with Nolan. I cannot explain the roller coaster of pain in bad times and joy in good times. I yearn to understand Gods plan but I know I will not. What I do know is God does have a plan and he only lets very special people handle these very special children. Noah’s parents are very special people. That is often the only comfort I find. Please pray for this family.
Well, Nolan is doing very well. We have been adjusting some of his meds up and down but he is starting to eat and drink more and the therapy is helping. His numbers remain excellent as respects red cells, white cells, platelets, etc. We are really trying to wean down the steroids so he can begin to grow more. We have been very pleased with the doctors and staff here. They are wonderful and thank God are working very closely with the doctors at Duke. You have know idea how much of a blessing that really is!
Now the best news! Nancy is off in Canada this week with her friend Stacy visiting friends. She is taking a well-deserved weeklong break from it all. I of course am having wild parties and living high on the hog!! Yea right! Actually I am struggling to keep up even with Ana and my sister Chelle. Wow, Nancy does allot! Seriously she deserves a break and what a blessing she can arrange to take it. If there is one thing I have learned through all of this it is what a wonderful woman God gave me. I love you Nancy!
When Nancy gets back she will be heading off to Duke for Nolan’s six month post transplant check – up. She will be gone for one week and my mom will be going with her. Thanks Mom, I love you. You just thought when you retired you would be staying home and resting. Seriously, I think my Mom has been busier in retirement than she ever was at work.
Well I must go now. Nolan needs medication; kids need to go to bed, work to be done, and no rest for the weary!! We will try to be more diligent in updating the website.
Please pray for little Noah and his family.
Please pray for my sister Rhonda who is recovering from a very serious illness.
Praise God for my sister Chelle, Shawn, and Hunter and Chase living only 3 miles from us!!!
Mike and Marian I miss you guys, hope all is well wherever you are from!
Sam
Monday, September 15, 2003 9:36 PM CDT Day T+164
I know, I know, where have we been? Well kick back and relax because we will be here for a while!!!! As much as I wished for home home, it sure isn’t Duke! Things at Duke had order and a schedule for the day. Here at home in the wonderful Colorado Rocky Mountains things have been spinning out of control, me included!!!
First if you did not know already, Nolan was released from the hospital on September 6th. We did have the scope done on September 5th and got the pathology report that gave no indication of GvH! Praise the Lord! So the docs here at Children’s think he must be recovering from a virus of some sort. I can live with that! They also said that it does not mean that there is no GvH, it only means where they did the biopsies there was no GvH! Wow they really know how to burst the bubble! Nolan seemed much better and start back with all his therapy’s this past week. He is making great progress already we have added “eat” and “up” to our sign language, he only knew “more” before last week. He has also been signing a version of Daddy, he hasn’t got the thumb to the forehead yet but we come really close. Thursday we started to wean the steroids again! So Friday Nolan decided to start throwing up again and having diarrhea. Of course this seems like old hat so we did not get all frantic and just waited until Saturday morning and called the fellow on call, he stopped the wean and had us go back to the original dose. Things have quieted a bit with him expect for a little diarrhea. On Sunday Cooper, Kenzie, Daddy and Ana Carla all came down with a stomach bug at about the same time!!!! It made for an interesting evening! Today they all seem to be a little slow moving and very quiet, Mackenzie and Daddy are still running a little fever but seem to be holding down a little food as of 2pm. Needless to say everyone stayed home from school and work today. Shawn, Michelle and I are just waiting for our turn! We are assuming Nolan is the culprit and that his bout of vomiting and diarrhea was a virus! Although he did not run any fever, so that could still prove to be GvH
Nolan’s new schedule reads like this, Monday at 2:30 he has OT, Tuesday we have 9:00 PT, 11:00 –Speech, Wed - clinic (we do have appointments here but most clinic days, Nolan still has to receive some IV’s so we spend a good portion of the day there), Thursday at 9:00 PT and Speech 2:30, we were suppose to have one more OT day but I claimed Friday as Nolan’s day off. Mixed in with all of Nolan’s activities Cooper and Mackenzie are carrying a load of fun activities after school, Cooper is singing in an audition choir on Tuesday’s, Wednesday’s he has Soccer and after Soccer he and Mackenzie have kids choir at church. Friday Mackenzie has ballet and then tap dance classes back to back, (mommy messed up again, I thought I was scheduling tap for Monday afternoon and proceeded to take her last Monday at 4:00, well there is no tap class on Monday’s, I signed her up for a class that starts 45 minutes after her ballet class ends on Friday’s so now we have a few minuets to hang out at the dance studio or at Stacey’s house!!) We are trying very hard for the sake of Cooper and Mackenzie to keep a very normal schedule of activities. Some things are just too hard to manage with Nolan and I feel bad every time I say, “we can’t do that, because Nolan can‘t be around a crowd” So the guilt took over and they each have three extra activities a week!!!
Ana Carla has been a wonderful God send to us! The children love her so much and enjoy spending time with her. She has a real knack for putting Nolan to bed!!!! It has just been a little stressful the past couple of weeks as we all adjust to one another in addition to all the other things going on in the house!! It will take some time for me to relinquish responsibilities and not feel like I must be involved in everything. I just don’t know how we would be doing this without Ana Carla. Since we have been home all of five weeks, I have forgotten meds three times, forgotten to put the Vori in the IV, so basically I ran dextrose with out the medicine in it, twice, forgotten to take Cooper to choir (the first rehearsal), and forgotten to pick of Kenzie from Kindergarten twice. My brain is on vacation and won’t come back! With Ana Carla here I hope to regain some brain cells and begin to act like a normal Mom again soon!
Shawn and Michelle moved in on September 7th. I still get a little weepy just thinking about how God provided this want of mine! They have laid claim to the basement and seem to be comfortable there. I don’t think I would mind it they just stayed here with us for a very long time! It has been nice having them around. We did go out Sunday in search of a house for them to rent, we think we may have found one not even ten minutes from my door!!!!! It will be so nice to have them so close by. I hope they don’t regret it when I am over at their house all the time. I know they are anxious to get settled into their own space and to escape the virus!!!!! Seriously I am so blessed to have them here; it is nice to know that God hears our every wish and wants to give us the desires of our hearts. I still sometimes wonder if the purpose of his provision of so much support is for the harder times yet to come, but I push that thought aside and rejoice in the fact that I have so much support to help me in whatever!
Again I apologize to all of you who faithfully read our site and keep up with Nolan’s progress, I have just been so out of sorts that I could not get to the computer and do an update. Also Aunt Chelle who has been doing some updates for me has been a little behind with the move and hopes to sign on again soon and help me out with the updates!!!! I promise not to let this much time pass again before an update is posted; I know from experience that no news usually does not always mean good news. I am anxious to get back to reading about all our caringbridge and Duke friends. I pray all is going well with everyone. I am out of time and out of news for now, there is actually more new to talk about but I don’t have the time to add it all in, maybe next time!
As always thanks so much for checking in and signing the guestbook it really means a lot. I know there are some people who thought when we returned home that the website ceased to exist, not soooo, I just seem to be updating slower. So let everyone you know that we are still out here and need the prayers! Thanks!
Love and Blessings,
Sam, Nancy, Cooper, Kenzie, Nolan, Ana Carla, Shawn, Chelle, Hunter and Chase!!!!
Thursday, September 4, 2003 0:45 AM CDT Day+ something??? I have forgotten where we are for the moment, when I get time I will count it up!!!
Thank you all so much for the sweet guestbook entries, it was so nice to come in tonight from the hospital and read them. Nolan is still on the BMT Unit here at The Children's Hospital Denver. Sam is taking his turn tonight and I will return at 9am in the morning. Nolan is improving and feeling much better. The doctors here have scheduled a scope procedure for Friday morning, so we will remain in-patient until Saturday. They feel like we are dealing with GVH, but want to rule out any infection. Nolan will have to be put under a general and have a tube down his throat, this always makes us nervous. I feel like the journey will just goes on and on and never ends. We were just getting a little settled and now we are once again all out of wack. Maybe I will always feel a little out of wack!
The doctors and nurses here have been so nice and very loving to Nolan. I had been very worried about all the "new" docs, nurses, unit, etc.! Of course God went ahead of me preparing the way, I should never doubt his ways. We still miss all of you at Duke who took such good care of us, Sam and I both were longing for the PBMT unit at Duke after spending a couple of nights at the unit here. They do not have a "rooming in" policy so we stay, but there is no bed only a chair, I have taken to sleeping on Nolan's play mat on the floor!! And the parent lounge has alot to be desired!!! They need some help with the little comforts of home, plus 24/7 you must wear these nylon, yellow, hot gowns!!! Nolan is on contact isolation so we must not only wear a gown on the unit but change gowns everytime we leave the room, we are constanly changing the gowns, have you ever tried to sleep in those silly things not really comfy!!! It has been yet again a wealth of new experiances for us. As always God has placed wonderful people in our path to care for us, I have only met one other mom on the unit, of course the unit here has only three other patients besides Nolan.
Shawn and Chelle close on their house tomorrow and leave for Colorado. We are expecting them here on Saturday or Sunday, I can hardly wait! I had great plans of having the house ready for them but it looks like that will not happen, so we welcome them to our messy home. I still have not finished unpacking from Duke. Maybe next week!
I have been journaling some at the hospital and will add some of it to the website soon. It is mainly reflections of mine and Sam's feelings during this whole process. We have expressed many times how thankful we are to have Nolan home and doing so well and how God has blessed us so, but sometimes did not express the emotions that flood our hearts and minds on a daily basis. When things calm down a bit, I will write about these journal entries.
It is late and I need to sleep,tonight is my night to get some sound sleep. Chelle or I will post again soon. Keep praying for Nolan and say some extra ones on Friday. Thanks for checking in, we really appreciate the continued support!!!! My Duke and website friends, I have not forgotten you and try to check your sites often, I just have not had the time to add guestbook entries please forgive me and I will be sending hellos soon. We miss you all and can't wait to see some of you in October at our Six month visit!!!!
Love and Blessings
Sam, Nancy, Cooper, Kenzie, Nolan and Ana Carla!!!!!
Sunday, August 31, 2003 0:15 AM CDT Hello. It's Aunt Chelle. I talked to Nancy tonight (Saturday) and wanted to pass along another update on little Nolan...
He's still on the unit at Children's Medical and will most likely be there until Monday. Today was a better day. His vomiting has stopped, but he still has diarrhea. The doctors are thinking it might be GVH (graft vs. host) of the intestine. He's not eating anything right now, but does do pretty well with the Pedialyte. He had a 48 hour round of antibiotics and finished up the last dose today. Nancy mentioned over the next week or so they may do a scope just to find out if it is in fact the GVH issue.
Overall, Nancy sounded good - tired - but good. Sam is at the hospital tonight. I didn't get to chat with him, but it sounds like he's hanging in there too!
Please keep Nolan and family in your thoughts and prayers as they push forward through the weekend. As always, thank you for visiting Nolan's page. We are so thankful for the love, prayers and support that the family continues to receive. Take a few extra minutes to sign the guestbook. I know the words of encouragement and support mean so much to them.
Smiles,
Michelle
Please continue to pray for our Transplant Friends:
MADDY - ALL
ALEX - home, AML
JEREMIAH - home, ADL
MANNY - ADL
NOAH - Krabbes
JORDAN - MPS II/hunter
ANDREW - home, MPS III/sanfilippo
TOMMY - MPS III/sanfilippo
JACK - MPS I/hurler
MATTHEW - MPS I/hurler
MAX - MPS I/hurler - in Minnasota
BELLA - MPS I/hurler - in Minnasota
THE SLAWSON'S - MPS I/hurler-scheie - ERT treatment
ALLISON - MPS I/hurler-scheie - ERT treatment
Friday, August 29, 2003 8:55 PM CDT Hello, it's Nolan's Aunt Chelle.
Nancy called this evening and wanted me to pass along an update ...
Nolan was admitted today to the unit at Children’s Medical in Denver. He was doing good yesterday then later in the evening started vomiting and had diarrhea. This went on throughout the night so Nancy called the hospital this morning. They said to bring him in. Once she got there they said he would definitely need to stay. They are giving him fluids, checking him out/running some tests. Nancy mentioned he would most likely stay through the holiday weekend.
That's the news for now. When I get additional information I'll be sure to make an update.
Please keep Nolan and the family in your thoughts and prayers. As always - thanks for visiting Nolan's page.
Smiles,
Michelle
Wednesday, August 27, 2003 11:38 AM CDT Hi! It's Nolan's Aunt Chelle again.
I'll bet you're wondering what's going on in Nolan's world.
Before I begin, ask any member of our family and they will confirm that I am not one to keep things 'short and sweet'. So grab a cup of coffee or a soda, get comfortable, then read on!...
The days are flying by and things are still spinning at the Ramsey household so I made the 'executive decision' to do an update for them. I used to think that no news was good news, but I've learned with our Caringbridge families that's not always the case. We want to make sure you're kept informed and given one less thing to worry about! I'll write first and ask for forgiveness later. Hopefully I won't leave out any important details! :o)
Overall, Nolan is doing well and adjusting to being home. Last Thursday he got a stomach bug. They ended up having to take him to the hospital for fluids on Friday. They ran some tests (which I don't think the results have come back as of yet), but they believe he had a viral infection. I talked to Nancy earlier this morning - she was at clinic for Nolan's checkup - she said Nolan is doing much better this week.
Nolan has started his therapy (speech, physical, OT) and seems to be doing well with it. Nancy mentioned they are still trying to work out a solid schedule with the therapy visits.
Let's see...what else...
Nolan's grammy and grandpa were there to visit last weekend. They haven't stopped talking about little Nolan! It was the first time they had seen him since he went to Duke earlier this year. They had a lot of "pent up" hugs and kisses to give away -- of course all hugs and kisses were dispersed fairly between Cooper, Kenzie AND little Nolan..smile. Sounds like their visit went great, but as always it was over much too soon!
Wondering about the mental health of Sam and Nancy? I asked Nancy for some quick thoughts (sorry Sam, I tried to call you for feedback but got your voicemail!). Nancy's words were: "frazzled, busy, nothing seems to get done, a little depressed" ... My take on it: they are SO THANKFUL to have Nolan home, but at the same time they're trying to adjust to life outside of Duke. It must be overwhelming for them at times. In addition to trying to manage the priorities and routines of a 'normal' family they have the addition of incorporating a schedule full of doctor visits, therapy, meds, etc.! Since Nolan basically has no immune system, he's very limited to where he can go and what he can do. While they can enjoy family time together at home - it's a little tricky to plan time together outside of the home (any of you ever spent ALL day inside with 3 kiddos?!). Right now there's not much "Sam and Nancy" time either. For those married folks out there - you know that can be tough in itself! I know Nancy misses the support network at Duke -- being around other families that truly understand what Nolan's world is like because they live in that same world! They continue to receive wonderful support in Colorado, but I'm sure it's different. Bottom line - THEY ARE BLESSED. They are thankful for their blessings. Now they're just trying to work through some "kinks" !! They are hanging in there though! And doing a GREAT job! The task ahead of them will never be as great as the Power behind them....
"I can do everything through Him who gives me strength."
One more important note... prior to posting this update I called and talked with Nancy's brother (aka Uncle Bubba). If you follow Nolan's journal you will remember that Nancy had mentioned in one of the entries that Nolan's Nana (Nancy's mother) would be going in for a biopsy in the next few weeks. She lives with lymphoma that has been in remission over the last year. She had a recent mammogram that showed some change. Well, Nana is actually at the doctor's office as I'm typing. Uncle Bubba said that her biopsy is scheduled for next Tuesday. Please continue to pray that the results of the biopsy are good. Nana, we love you and we will be praying for you!
I think that about covers it for now. As always, thanks so much for visiting Nolan's page. The family is grateful for all of the prayers and support they continue to receive from so many of you. Please take time to make a guestbook entry. I know they would love to hear from you! And for those of you who don't sign the guestbook, but are still remembering Nolan in prayer, thank you!
Smiles,
Michelle
Monday, August 18, 2003 10:41 AM CDT Day T 136
Praise the Lord we are Home Home!!!! Well I am finally getting around to updating!!! It has been a long week of adjustments. Thank you Chelle for updating for me, it was just not possible for me to get to the computer last week. I have been so overwhelmed with being at home, that I can barely get all the medical stuff done. We are thankful to be here, just a bit overwhelmed. Nolan is doing great though, he loves being at home (even though I don’t think he remembered it as home) So far we only have to go to clinic once a week and draw labs once a week, wow what a change from Duke. Clinic here seems so different, maybe because we did not transplant here, but Dr. Quinones seemed to think Nolan is doing well and looks very good. His labs were all good. He is still on high steroid doses and hope to start to wean them this week. Dr. Ralph said on the dose that he is on currently Nolan will not grow. We still have three IVs a day and six oral medications twice a day. Nolan is still going strong on the orange food group. We have tried to introduce new colors and flavors without much success! We have not been able to start therapy yet and worry that he will regress some. We tried to work with him ourselves this weekend and he just cried! I think he misses Miss Barbara and Miss Beverly from Duke Home Health! The hardest part for me has been taking care of the other things around the house and Cooper and Kenzie. You know, now that we are home, I have the added stress of running the house plus all the things I had to take care of while at Duke, we just changed scenery. I think sometimes everyone thinks now that we are home things are back to “normal”, NOT!!!! Nolan is still recovering from the transplant and will be for the next six to nine months. We wish we could bring him out so that everyone could see him and welcome him home, but he is still on isolation from crowds. He will pretty much be at home for the next few months. We appreciate all the calls and friends stopping by, please remember if you have a cold, fever, do not feel well or have had a live vaccination in the last 30 days to save your visit for another day. We would also appreciate only adult visits at this time, although we love the kids it is much harder to keep them germ free, so for now we are being very cautious.
Cooper and Kenzie will be starting school at the end of the week. They are very excited and can not wait to get going! Our main concern with school starting will be germs!!!!! They bring home every virus out there, so we have started new precautions to protect Nolan. Lots of hand washing, clothes changing and we are asking the school to let us know when there is an out break of anything so we can keep them home for a few days. We have also decided with all the time and care that Nolan requires that we can not be super mom and dad and do it all on our own, so we have met a very nice Christian nanny, Ana Carla that will be coming to live with us. She has been visiting the last few days getting to know the children and how our hectic lives work, she should be moving in around the 26th of August. We feel God has led her to us in answer to prayer for help over the next year. We are so grateful and praise God for this answer. With Ana Carla coming to stay, we have decided that Mackenzie will not have to attend full day Kindergarten (you have to pay extra in Colorado for all day, half day is free). I am looking forward to getting to know Ana Carla and sharing our lives with her.
Soon Aunt Chelle and Uncle Shawn and crew will be moving in!!! I am so excited. Finally we will live near each other (not only near, but house mates for the time being) God is so good. I know it sounds like we will be over flowing with people, but I believe God has arranged to surround me with people, my support group! Leaving Duke you leave a tremendous support system, all the people who understand how you feel and know how your life really is. Being home just one week I have experienced the feeling of being very alone (Peggy I feel your pain), the Lord has been good to me and I would not trade being at home for anything, I just think it will take some time to get used to being here without all the wonderful staff and families at Duke. We miss you all!!!!
Coming home we had another sad situation to face, our beloved pastor Dewayne and wife Beverley are moving back to Canada! They were such wonderful support for us as we traveled this difficult road. We grew to love them as part of our family. We will miss them so much; a huge void will be left as they leave. Another reason God has provided so many people to surround me. I know they are following the Lords leading and that his plan is always the best, but it is not always easy. We love you both so much and can not wait to see you again!!!! Please be in prayer for our church as we face searching for a new pastor to lead us.
So many changes have taken place this year, some good, some not so good, but the Lord continues to hold us in his hand and make a way for us. We are blessed beyond words and treasure each moment we have. Life has new meaning and we will never be the same. Please remember to pray for all our friends back at Duke and the ones who have made the transition to home home. Say an extra prayer for Nana, she will be having a biopsy in the next few weeks, she lives with lymphoma that has been in a sort of remission over the last year, a recent mammogram has shown some changes. Please pray that there is nothing there when they do the biopsy. Thank you for the continued support and love shown to us as we continue the journey at home. Please don’t forget to sign the guestbook!!!!
Love and Blessings from Erie, Colorado!!!!!
Sam, Nancy, Cooper, Mackenzie and Nolan
Thursday, August 14, 2003 0:08 AM CDT Finally, the news you've been waiting for...
NOLAN IS HOME IN COLORADO!!!
This is Nolan's Aunt Chelle. Nancy asked me to do a quick update so their Caringbridge friends and family could be kept up-to-date on Nolan's progress.
Nancy and Nolan arrived home safely last Saturday night. Their original flight was planned to arrive on Sunday, but they couldn't wait so they caught an earlier flight home! Sam was still in-route with the U-Haul, Cooper and Mackenzie. They arrived in Colorado on Sunday afternoon.
Nolan is doing good. He went to his first clinic visit at the Children's Hospital in Denver on Tuesday. He's had some significant congestion so they ran some tests to make sure he doesn't have an infection, but most likely he's just trying to adjust to the different climate (note that Nancy was throwing around some 'medical jargon' during our conversation - which even after 8 months I've still yet to grasp - so I'm putting this in layman's terms!). Overall, his first clinic visit went great! We give all glory and honor to God for the progress that Nolan continues to make. What a true blessing!
The family is doing well. Overwhelmed, I think, but elated to be home and spending real family time together. In addition to trying to unpack, they are learning to adjust to their "home routine" with Nolan's medical care. It's all falling in to place... it just takes time.
Thank you for visiting Nolan's site. Our family is grateful for all of the prayers and support that we continue to receive from so many of you. The prayers are working! Take a moment to sign the guestbook -- this week will be an adjustment for them and I know they could use the love and encouragement. And for those of you who don't sign the guestbook, but are still remembering Nolan in prayer, thank you.
Nancy will be logging back in to give a more detailed update soon so be sure to check back often.
Smiles,
Michelle
Please continue to pray for our Transplant Friends:
MADDY - ALL
ALEX - home, AML
JEREMIAH - home, ADL
MANNY - ADL
NOAH - Krabbes
JORDAN - MPS II/hunter
ANDREW - home, MPS III/sanfilippo
TOMMY - MPS III/sanfilippo
JACK - MPS I/hurler
MATTHEW - MPS I/hurler
MAX - MPS I/hurler - in Minnasota
BELLA - MPS I/hurler - in Minnasota
THE SLAWSON'S - MPS I/hurler-scheie - ERT treatment
ALLISON - MPS I/hurler-scheie - ERT treatment
Thursday, August 7, 2003 8:54 PM CDT Day T+125
Nolan came through the surgery with flying colors!!!! We now only have a single luman. We did our final meeting with Caryn and Dr. Szabolcs (we met with them yesterday, but they just had to see us one more time!!!) We sure will miss them! Tomorrow and Saturday we will drop labs for the last time here in Durham! Looks like we are really going to go. I will leave to get Sam in a couple of hours. I have most of the apartment packed, it really is sad all the stuff we are taking home. I will try to snap a shot of the U-haul on the digital camera and put it on the page. I don't know how I will sleep the next couple of nights. Saturday I get to learn how to mix drugs! Yeah now I get to be a pharmacist in addition to being a nurse! We are taking two weeks of Nolan's IV meds home, but some of them are not stable more than a couple of days so I will be mixing them as needed.
I do not have much info tonight, but wanted to write one final entry from North Carolina, I will be sending the labtop back with Sam so I will be off line for the next couple of days. Please keep praying for Nolan that all goes well on our trip home and for his continued healing once we are home. I have just read about two of our transplant friends who went home recently and they both are in PICU. Please pray for them and stop by their site and give them your support. Cody www.forcody.com and Jillin www.caringbridge.org/oh/jill
As always thank you so much for checking in on us and signing the guestbook, I know we are going to make 100,000 before Sunday (hint, hint)!!!!!!!
Love and Blessings from Durham, North Carolina, next stop Erie, Colorado!!!!!!!
Sam, Nancy, Nana, Cooper, Kenzie and Nolan
Wednesday, August 6, 2003 9:32 PM CDT Day T 124
Happy 60th Birthday Grammy!!!!!
Today was a very busy day for Nolan. We went to clinic for our regular weekly visit and also to iron out the details of our return to Colorado!!! Nolan is still doing very well. The only issues we seem to be dealing with at this point is low mag. and high blood pressure. All easy things to fix at home!! Dr. Szabolcs decided to pull one of Nolan's lines before we leave, so last minute today we had to go for a pre-op visit. Nolan will have surgery tomorrow to have the double luman removed. We are keeping the single for blood draws and IV meds. It should be a very simple procedure, but please keep him in your prayers for anytime a hurler baby goes under anesthesia there could be problems.
We made the rounds today saying our goodbyes, I got a little emotional at times and even more so up on the unit. All our nurses were so glad to hear we were going home and said how good Nolan looked especially with his new glasses. Everyone seems to like the new look. I am excited to leave and go home but sad to leave all the wonderful people we have met here. We will miss you all, you have meant so much to us during our transplant journey. I won't ever forget the wonderful nurses and doctors we have here. I know I sound like we will never see any of you again, we will be back in October for the six months studies and hope to see you all then!!!! We gave Dr. Szabolcs a stuffed Giraffe to remind him of Nolan because he seemed to like the one Nolan had on the unit so much! He even carried it to PICU for Nolan to have in his crib on our second trip there. Caryn I know you must have remined him of the giraffe story!!!! That was way too smooth! Anyway we are so grateful to Dr. S and Caryn for the wonderful care they have given Nolan. We will miss you guys the most. Wish we could just pack you all up and take you with.
Tomorrow night Sam will be back. I still have a few things to get packed up, so I hope we get out of clinic early!!! After the surgery we have to go back to clinic and have IVIG and go over the go home letter that will be sent to our new doctors in Colorado. I am so anxious that I don't know if I can make it until Sunday night! Please, it you think about it pray for me not to be too fidgety! Only four more days. I will probably try to update tomorrow after we get home from clinic to let everyone know how the surgery went and how Nolan is doing. Then I plan to pack the computer and send it home with Sam. Friday morning we pick up the U-haul and load everything! Sam and the kids plan to leave around 1pm, the idea is to be in Denver around 11pm on Sunday. Nolan and I will be stuck at the apartment until Sunday after they leave. Nana leaves Saturday morning early to go back to Dallas. Then late Sunday evening Nolan and I will depart for home! I does not seem real yet! Please be praying for us on Sunday, I have a lot of carry on and I am very nervous about having Nolan in the airport.
Well that is all for tonight, I feel like I have been rambling. Please remember Maddy (princessmadison)tonight, she was admitted to the unit a couple of days ago for an infection, they hope to be getting out tomorrow. Her counts are pretty low, but they are pumping her full of antibiotics. Pray that she knocks this thing out of the water. As always she is her fun loving self, asking about baby Nolan. Also continue to remember all the kids here, there are so many and more everyday that need your prayers.
Love and Blessings
Nancy, Nana, Cooper, Kenzie and Nolan
A few of our Transplant Friends who could use your prayers:
MADDY - ALL
ALEX - home, AML
JEREMIAH - home, ADL
MANNY - ADL
NOAH - Krabbes
JORDAN - MPS II/hunter
ANDREW - home, MPS III/sanfilippo
TOMMY - MPS III/sanfilippo
JACK - MPS I/hurler
MATTHEW - MPS I/hurler
MAX - MPS I/hurler - in Minnasota
BELLA - MPS I/hurler - in Minnasota
THE SLAWSON'S - MPS I/hurler-scheie - ERT treatment
ALLISON - MPS I/hurler-scheie - ERT treatment
Saturday, August 2, 2003 12:26 AM CDT *****NEW PHOTOS*******
Day T 120 (I think)
Things are moving right along for our departure on Sunday, August 10th our 128th day post transplant. Nolan is feeling better today, we had a couple of days that he just was not himself and kinda had us worried that he was coming down with something. His liver function has been high for the past week, but we got some labs back today that show it is starting to come down. He has been having to get IV Magnesium almost everyday, it seems common for these kids to have low mag. We will go home with IV mag in addition to the IV Voriconazol. He continues to eat his cheetos and cheese nips and drink orange pedialyte, we think he has a thing for orange!! His lips and tongue always have an orange glow about them. We will have our last offical clinic visit here on Wed. We will get all our regular weekly IV drugs and visit with Dr. Szabolcs one last time, I think we will have to do labs on Friday and on Sat to check Mag levels before we leave. I am still not putting all hope into leaving next week. I don't think I will get my hopes up until we are sitting on the plane, thousands of miles in the air, then I might get excited.
It seems impossible to get the apartment all packed up! What was I thinking when I got all this extra stuff!!!! I am not sure where it will all go when we get home. Wow you sure can collect a lot of stuff in five and a half months. It seems the more I pack the more I find in a drawer or closet. I hope it all fits in the U-haul.
Nana arrives tomorrow afternoon and Sam leaves tomorrow night. I pray this week flys by and we are all back together again on Sunday night in our home. I have tried
clicking my heels but nothing yet! Keep praying for Nolan to stay stable so we actually get to leave. I am kinda sad about leaving all our wonderful nurses, NP's and doctors and all our fellow transplant families. They know Nolan so well and we just feel comfortable here. I know we will get to know the new clinic at home in time, but it is so nice to be "where everybody knows your name".
Praise report!!!!! My sister-in-law and brother-in-law, Shawn and Michelle have sold their house!!!!!!! They will be moving in with us the weekend of Sept 6th. Yeah God!!!! He knew I would need them and he has provided my support!!! Thank you all for praying that this would come to pass, Michelle and I have prayed for this for ten years, we will finally be able to have our morning chai!!! The Lord just continues to rain blessings on our family! The year that started with such tragic news is turning out to be our banner year!!! The Lord is showing himself in every area of our lives and family. I know there is more good news coming!!! (Ask me later!!!) This year in a nut shell: Nolan has a successful transplant!, My children survived five months without me, Sam's brother John married a wonderful woman Amy, Sam's Sister Michelle had a beautiful little baby Chase, Shawn and Chelle's house sold and there is so much more!
We will keep you posted as our busy week continues! Please remember to pray for all our precious transplant families.
Love and Blessings!!
Sam, Nancy, Cooper, Kenzie and Nolie
A few of our Transplant Friends who could use your prayers:
MADDY - ALL
ALEX - home, AML
JEREMIAH - home, ADL
MANNY - ADL
NOAH - Krabbes
JORDAN - MPS II/hunter
ANDREW - home, MPS III/sanfilippo
TOMMY - MPS III/sanfilippo
JACK - MPS I/hurler
MATTHEW - MPS I/hurler
MAX - MPS I/hurler - in Minnasota
BELLA - MPS I/hurler - in Minnasota
THE SLAWSON'S - MPS I/hurler-scheie - ERT treatment
ALLISON - MPS I/hurler-scheie - ERT treatment
Wednesday, July 30, 2003 10:17 PM CDT Thanks so much for all the encouraging words on the guestbook. I sometimes forget why we are here!!! Not for my plan but for His, and if He is not finished using Nolan and us in Durham than we can stay as long as it takes!!! We are just so grateful and blessed to be taking home our little boy. The Lord has led us through the raging river and we will never fail to give him the glory for Nolan's successful transplant and the wonderful progress he has made. As I have stated before we could not be doing this without leaning heavily on the Lord for all our strength. God has provided a wonderful support system for us through our family, friends, church family and our wonderful website friends. We appreciate all the prayers and love.
I was just informed today that one of our transplant friends that we are very close to is back in the hospital in the PICU in Seattle, WA. Alex Martini and her family just left Duke a couple of weeks ago, they were a wonderful support to me while Nolan was in PICU, in fact Andrea, Alex's Mom was one of the first people to come and hold my hand while Nolan was coding the first time, from that moment on she had a special place in my heart. Please say extra prayers for Alex tonight and stop by their site and let them know you are praying for them. www.alexupdate.com
I have a few thank yous to add tonight, as always when I spend my last dollar the Lord provides. I thank him daily for our many thoughtful friends.
April Kreger - Thank you so much, you are my life saver always, I literaly spent my last dollar right before I opened your card. You have been a wonderful source of encouragement with your words and I will always hold you close in my heart.
Andrea Bell - Cooper just loves the Bionacle and Kenzie has carried the book and cup around for three days every where we go. You are the greatest! We miss ya'll and hope to see you soon. Also thanks for letting the carpet cleaners in!!! You are the best neighbor( of course all the other neighbors have moved away!!!hehe, just kidding)
I hope I did not miss anyone, my mind still is not working well and I often forget where I am or where I am going, I hope this corrects itself once we are home!!!! If I did forget to mention a thank you please forgive me, and Thank you.
We are making the plans for the next week and a half, Nana will be back on Sunday to help out while Sam is in Colorado. Then Sam will be flying in next Thursday evening, late and he and the children will leave sometime Friday afternoon. Nana leaves Saturday morning and then Nolan and I will leave on Sunday. Hopefully if all works out, Sam and the kids will be in Denver Sunday evening to pick us up at the airport. Please keep us in your prayers as we get this show on the road! All things are possible!(I am singing that in my head right now in case you wanted to know((Stacey, I know you are laughing))
That's all for now. Don't forget to sign the guestbook(we want to break a 100,000 before we go home!!!! hehe, just kidding but please sign before you go)
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolan
UPDATE: It is Thursday Morning and I just got an e-mail from Alex's Grandmother, She is doing much better and she has been moved to a room on the bone marrow unit. Hopefully they will be out in a day or two!! Keep praying, God is listening!!
A few of our Transplant Friends who could use your prayers:
MADDY www.caringbridge.org/nc/princessmadison -ALL
ALEX www.alexupdate.com - home AML
JEREMIAH www.caringbridge.org/ia/jeremiah - home ADL
MANNY www.caringbridge.org/sc/mannymiramontes -ADL
NOAH www.caringbridge.org/hi/noah - Krabbes
JORDAN www.caringbridge.org/il/jordan - MPS II/hunter
ANDREW www.caringbridge.org/page/andrewshope - home MPS III/sanfilippo
TOMMY www.caringbridge.org/ca/bennetboys - MPS III/sanfilippo
JACK www.caringbridge.org/mo/jackshuler - MPS I/hurler
MATTHEW www.caringbridge.org/md/matthewsackett - MPS I/hurler
MAX www.might-max.com - MPS I/hurler - in Minnasota
BELLAwww.caringbridge.org/ia/isabella - MPS I/hurler - in Minnasota
THE SLAWSON'S www.caringbridge.org/ca/slawson - MPS I/hurler-scheie - ERT treatment
ALLISON www.caringbridge.org/nd/allison - MPS I/hurler-scheie - ERT treatment
Tuesday, July 29, 2003 9:30 PM CDT Day T 116
Well as always in a day things change rapidly. We will not be leaving on Saturday. Our new doctor in Colorado will be out of town until August 11th , so Dr. Szabolcs does not feel comfortable sending us home until next weekend. We are very disappointed but understand that leaving this week all hinged on Dr. Quinones in Colorado. I have stopped dead in my tracks with the packing, now I can resume a much slower pace about getting things ready to go. It was just not in the plan for us to leave earlier than expected. Nolan is doing well in all his therapy and he continues to eat his favorite cheetos(daddy hates it when I break out the cheetos each day because than Nolan smells like cheese and we all know how much daddy loves cheese!!!!) Nolan also has little orange fingers after he finishes off the bag. We are trying to map out the plan for the next couple of weeks, not leaving this weekend creates a slight problem for Sam, he has to be in Colorado Tues, Wed, and Thurs, for some meetings so he will be flying home on Sunday. He will return at the end of the week to pack us up and drive back to Colorado. Fortunately my ticket is non-restricted and can be changed without additional charges. So we are working out details and trying to keep a positive attitude, we are still going home, just not when we wanted to. We have to remember to be thankful that we are taking home our child and not complain about when. We appreciate all the well wishes, it was so nice to read them this morning before we found out we would be here for another week. Please continue to pray for Nolan and our family as we wait. We are anxious to be home.
And God Said "No"
I asked God to take away my pride. God said, "NO" It is not for me to take away, but for you to give it up.
I asked God to make my handicapped child whole. God said, "NO" His spirit is whole, his body is temporary.
I asked God to grant me patience. God said, "NO" patience is a by-product of tribulations, it isn't granted, it is earned.
I asked God to give me happiness. God said "NO" I give you blessings. Happiness is up to you.
I asked God to spare me pain. God said "NO" Suffering draws you apart from worldly cares and brings you closer to me.
I asked God to make my spirit grow. God said "NO" You must grow on your own, but I will prune you to make you fruitful.
I asked for all things that I might enjoy life. God said "NO" I will give you life so that you may enjoy all thinkgs
I asked God to help me LOVE others, as much as he loves me God said.......Ahhhh, finally you have the idea.
We will keep you posted as the week unfolds.
Love and Blessings,
Sam, Nancy, Cooper, Mackenzie and Nolan
A few of our Transplant Friends who could use your prayers:
MADDY www.caringbridge.org/nc/princessmadison -ALL
ALEX www.alexupdate.com - home AML
JEREMIAH www.caringbridge.org/ia/jeremiah - home ADL
MANNY www.caringbridge.org/sc/mannymiramontes -ADL
NOAH www.caringbridge.org/hi/noah - Krabbes
JORDAN www.caringbridge.org/il/jordan - MPS II/hunter
ANDREW www.caringbridge.org/page/andrewshope - home MPS III/sanfilippo
TOMMY www.caringbridge.org/ca/bennetboys - MPS III/sanfilippo
JACK www.caringbridge.org/mo/jackshuler - MPS I/hurler
MATTHEW www.caringbridge.org/md/matthewsackett - MPS I/hurler
MAX www.might-max.com - MPS I/hurler - in Minnasota
BELLAwww.caringbridge.org/ia/isabella - MPS I/hurler - in Minnasota
THE SLAWSON'S www.caringbridge.org/ca/slawson - MPS I/hurler-scheie - ERT treatment
ALLISON www.caringbridge.org/nd/allison - MPS I/hurler-scheie - ERT treatment
Monday, July 28, 2003 5:12 PM CDT Day T 115
WE ARE GOING HOME!!!!!!!!!!!!!! WOOHOO!!!!!! Praise the Lord for He is good. It looks like Saturday will be the day! We met with Dr. Szabolcs this morning and ironed out a few things and if things can be worked out with the Doctors in Denver, then we are headed home on Saturady, we just booked our flight! What a feeling to finally be going. They stopped TPN today, but did not lower the BP meds, his blood pressure today was 142/73 when we got to clinic. They are not going to lower much else, we seem to be stable and why rock the boat? We have switched into high gear getting the apartment packed, renting a U-haul(yes I said U-haul, we have aquired some extra stuff!!!!), returning oxygen tanks, pulsox monitor, getting the house ready in Colorado and the list goes on. Sam, Cooper and Kenzie may leave on Thursday if we can get all the details worked out, so that they can pick us up at the airport and we can all return to our home together. I seem to be having a very emotional day, I can't help the tears. I am so overjoyed. Please pray, pray, pray that this comes to pass. We are so grateful for all the prayers that have been offered for Nolan and will never be able to repay the love and kindness shown to us. The book is not over we are just starting another chapter and will continue to need your prayers and support at home.
Thanks for checking in on us and I will keep you posted as the week progresses!!!
"Let us hold unswervingly to the hope we profess, for he who promised is faithful" Hebrews 10:23
Let the packing begin........
Love and Blessings,
Sam, Nancy, Cooper, Kenzie and Nolan
A few of our Transplant Friends who could use your prayers:
MADDY www.caringbridge.org/nc/princessmadison -ALL
ALEX www.alexupdate.com - home AML
JEREMIAH www.caringbridge.org/ia/jeremiah - home ADL
MANNY www.caringbridge.org/sc/mannymiramontes -ADL
NOAH www.caringbridge.org/hi/noah - Krabbes
JORDAN www.caringbridge.org/il/jordan - MPS II/hunter
ANDREW www.caringbridge.org/page/andrewshope - home MPS III/sanfilippo
TOMMY www.caringbridge.org/ca/bennetboys - MPS III/sanfilippo
JACK www.caringbridge.org/mo/jackshuler - MPS I/hurler
MATTHEW www.caringbridge.org/md/matthewsackett - MPS I/hurler
MAX www.might-max.com - MPS I/hurler - in Minnasota
BELLAwww.caringbridge.org/ia/isabella - MPS I/hurler - in Minnasota
THE SLAWSON'S www.caringbridge.org/ca/slawson - MPS I/hurler-scheie - ERT treatment
ALLISON www.caringbridge.org/nd/allison - MPS I/hurler-scheie - ERT treatment
Sunday, July 27, 2003 9:49 AM CDT Day T 114
Just a short update on the last few days. Nolan went to clinic Friday and Caryn cut the TPN to 200ml, that is almost nothing!!! It sure does make for a lot fewer diapers at night. We normally change them every couple of hours while he is on TPN. Monday we should be able to cut it all together. They also are considering dropping one of the blood pressure meds (we have three), Nolan's BP on Friday was 96/63 that is the best one we have had since February!!! We will go in on Monday for an other check on it and if we get a good reading than they may drop one. That would be great, one less oral med!! Things seem to be moving along for the departure sometime around the 8th., we are treading lightly and take one day at a time. We have made the back up plan in case Nolan has to stay for some reason. We will slowly start to pack up the apartment at the end of the week. Nolan is also eating like a little champ, thank you all for the prayers, we are so grateful to see him eating again. Still not drinking anything but the pedialyte but with as much food as he is eating (mainly cheetos puffs and veggie crackers) he is keeping the calories up.
Congratulations on going home Andrew and Jeremiah!!! Today is the day. Andrew left today by train and Jeremiah is leaving as I write(Sam and Cooper took them to the airport)by a corporate jet. I am so happy for you both and pray all goes well on your return home. It is days like today that we all wait for, to finally leave this place with your child in tow. Praise the Lord you made it!!!!! I won't ever forget either of you and will be checking the websites!
Another of our transplant friends is in need of your prayers, little Princess Maddy, she has recently relapsed and will be undergoing some heavy duty treatments. She is the cutest little thing and we have become good friends with her family. They have a strong faith and are so thankful for each moment they have as a family with Maddy. Stop by her site and let them know you are praying for them, I know it will mean a lot. www.caringbridge.org/nc/princessmadison
My days here now are filled with laughter and noisy running children, I am so blessed to have them all here. It can get very stressful with all of us in the little apartment with no where to go, but we are all together and I can deal with a little close accomidations. Nolan is getting used to Cooper and Kenzie and even sits with them on the floor now and trys to grab at whatever they are doing, (cards, games, colors) but they enjoy having him to play with.
Please continue to pray for our little Nolan and all the other children we have encountered here, they are our family and we love and care about each one. Don't forget to sign in on the guestbook, Nolan loves to read the entries!!!!
"It is God who arms me with strength, and makes my way perfect" Psalm 18:32
Love and Blessings
Sam, Nancy, Cooper, Kenzie and Nolan
A few of our Transplant Friends who could use your prayers:
MADDY www.caringbridge.org/nc/princessmadison -ALL
ALEX www.alexupdate.com - home AML
JEREMIAH www.caringbridge.org/ia/jeremiah - home ADL
MANNY www.caringbridge.org/sc/mannymiramontes -ADL
NOAH www.caringbridge.org/hi/noah - Krabbes
JORDAN www.caringbridge.org/il/jordan - MPS II/hunter
ANDREW www.caringbridge.org/page/andrewshope - home MPS III/sanfilippo
TOMMY www.caringbridge.org/ca/bennetboys - MPS III/sanfilippo
JACK www.caringbridge.org/mo/jackshuler - MPS I/hurler
MATTHEW www.caringbridge.org/md/matthewsackett - MPS I/hurler
MAX www.might-max.com - MPS I/hurler - in Minnasota
BELLAwww.caringbridge.org/ia/isabella - MPS I/hurler - in Minnasota
THE SLAWSON'S www.caringbridge.org/ca/slawson - MPS I/hurler-scheie - ERT treatment
ALLISON www.caringbridge.org/nd/allison - MPS I/hurler-scheie - ERT treatment
Wednesday, July 23, 2003 9:08 PM CDT Day T+110
Yesterday was a very good day at clinic. "Terrible Tuesday" seems to be a thing of the past, we were the first ones seen by Dr. K and were out and on our way home by 1 pm. That is record time on a Tuesday, of course we were there right at 8:30 am. Plus the bonus was she had all good things to say. She cut Nolan's TPN a little, not as much as we thought she would, but it is better than none at all. I believe they will cut it again on Friday if all is still going well. We also got the results back from the second fish test( a test to determine if Nolan's cells are the donors)We are still 100 % girl cells!!!!!! We hear that 100% is not common that most kids come back 99 or 98%. We have been 100% both times the test has been ran. Dr. K also said she saw no reason why we could not plan to leave here around August 8th IF all things continue to progress as they are. That was the news we were waiting for!!! Still I am not marking my calander just yet! I will make the call to Corporate Angel to see what they might have going our way around that date. I have also started to make arrangments for speech and PT when we get home and on the chance that we might be going home on the 8th,I e-mailed our doctor in Denver to let him know we may be returning soon. So the ball is in motion, but it could always bounce the wrong way. Pray, Pray, Pray that Nolan continues to improve and we make the transition home. I am trying not to get too excited about the chance to leave, but I am getting very fidgety. Also please pray that Nolan will start sleeping better, he seems to have a really hard time at night, he wakes every two hours and has pedialyte, we have offered pediasure and milk because they would seem to be more filling but he will only take the pedialyte, so he drinks some (about 9 oz) every two hours all night. Pray for us also because of course if he is not sleeping we are not either.
Speaking of going home one of our friends is headed home this week. Andrew Bowmen and his mom and brother, Simon will be leaving after being here over 100 days( they come for a short visit), Andrew transplanted two years ago, you can read more about him and his journey at www.caringbridge.org/page/Andrewshope Stop by and wish them well. Ellen has been such an inspiration to me, she and her boys have endured more than their share. I have enjoyed getting to know them, the bond of MPS runs deep. I will miss you guys and hope to follow your lead and leave soon!!!
Tonight we had a fun visit from a hurler friend named Maddy and her family, Maddy is five years old and transplanted four years ago. It was so nice to see how well she is doing. We have such hope for Nolan and his future. Maddy seems like any other five year old we know(Mackenzie!!!). The kids all seem to hit it off great and we had a nice visit. Thanks guys for coming over to see us!
The kids are really keeping us busy. They are so loud, I don't remember them being that loud. It takes alot more effort to keep the apartment clean and picked up, but I have enjoyed being a Mom again, I love kissing everyone goodnight and kissing everyone goodmorning. We are so blessed to be together, I will never take that for granted again!!!
Hug your kids tight and kiss them all goodnight!!
Love and Blessings
Sam, Nancy, Cooper, Mackenzie and Nolan
Monday, July 21, 2003 9:55 PM CDT Day T+108
** I actually wrote an update yesterday from the plane, but never had a chance once we got back to the apartment to post it so it is attached at the end of today’s update.
Well it sure is nice to have all my little chicks in one place for a change. It is very noisy and busy but I would not trade it for anything. Cooper and Kenzie were so excited to see Nolan yesterday. I think Nolan is a little frightened by the two tornadoes that came whirling into the apartment. He seems happy to see them but he seems overwhelmed with them at the same time. They are now taking his mommy time and his toys!!!!!! Nolan is doing great and eating up a storm! He is now eating three or four jars of baby food, veggie crackers, vanilla crackers and some puffy cheetos. Fruit loops have taken a backseat to the other new fun stuff. Yeah Nolie!!! Still nothing liquid except the pedialyte, but he has eaten almost 600 calories everyday since Friday. Caryn says she thinks Dr. K will cut the TPN in half tomorrow and then maybe take if off by Friday if he keeps this up. She has even talked of going home around August 8th. I am not writing anything in permanent ink, but I am hopeful.
Nolan looks so cute in his new glasses and he leaves them on. I am amazed at what the kid does. He is so used to having foreign items attached to his body that he thinks it is normal. I hope he can see better and not just leaving them on because we put them there. I looked through them and boy is he blind!!!! I hope the glasses are helping!
Manny, one of our transplant friends is still having some problems. Please remember him and his family in prayer. My heart just aches for them as they struggle through, Manny has had such a hard journey and it seems to just keep getting harder. Please stop by their website and check on him. I am sure they would welcome all the prayers
www.caringbridge.org/sc/mannymiramontes
I am always so grateful to all of you who check on us daily and I apologize for not doing daily updates anymore. Things have been pretty busy, but there is really no excuse, you make time to check on us and pray for us I should at least take the time to write how our day went. We have been so blessed and continue to be showered with love and blessings. Thank you, each and everyone for being apart of our journey, we would not have made it this far without your love and support. We continue to ask for your prayers as we move forward toward our new life with Nolan.
Thank you Stacey!!! Need I say more, the Lord will reward you for your kindness and love you showed to me and my son!! We miss you already! Nolan needed you to set up the TPN and Vori and lets not forget the orals!
Love and Blessings
Sam, Nancy, Cooper, Mackenzie and Nolie
Sunday, July 20, 2003
Day T+107
It has been a very busy week. Nolan is eating a little more thanks to Beverley and Stacey, they are feeding him some table food, but still not drinking anything but pedialyte. We need him to start drinking something with more calories before he can get off the TPN (cheeseburger in a bag). He has spent the weekend with Stacey and Beverley (our angels!!!!). They all seem to be doing well. They took him to clinic on Friday and were in and out in one hour!!! Wow that never happens to me! They also picked up his new glasses! He has been getting used to wearing something else on his face! I can not wait to see him! Stacey called this morning and said Caryn wants them to bring Nolan in for another blood draw for his FK506 (immune suppressing drug) level, it was a little high yesterday, but other than that all is status quo. We are in flight on our way back to Durham with Cooper and Kenzie. It feels so good to be a family again. We have missed them so much. They seem like they have grown up while they were away.
The wedding was beautiful. Congratulations John and Amy, I am so glad I was able to be apart of it. Thank you for including my children, they were so thrilled to participate and loved every minute. They have a new “favorite” Aunt Amy!!! They still have the old “favorites” Aunt Rhonda and Aunt Chell too. It was great to see everyone at the wedding; I can not believe it has been so long since I have seen you all. I finally got to meet my new baby nephew Chase, he was born in January but with all the Nolan stuff I have not had the chance to meet him. You are a cute little bug!! Hunter you are a cute little bug too and I really enjoyed seeing you!!! Next time we see you we hope Nolan will be with us. It has been a long road and we thank all of you for praying for us and checking on the website. It felt a little funny doing very normal everyday things and not having to draw blood or run to clinic. I really appreciate our wonderful friends who made this weekend happen, Stacey and Beverley!!!! We love you guys so much. Thank you to David and Dewayne too!!!
I am a little sad returning to Durham; Peggy has already left to return home. Jeremiah will still be around for a couple of more days and then be flying home with his dad, Chris. I think the Lord knew I would be very lonely when Peggy left so he made it possible for the kids to come stay. Congratulations Peggy and Jeremiah on the jail break!!! I will miss you chickie!!! Call me soon!!!!!!
The next few weeks should be very busy with all of us back together, we will have a few adjustments I am sure! Please be praying that we all fall into a routine quickly and that we adjust to living all together again. It has been five months since we all slept under the same roof!!!!! I am so thankful to have my family back! We are planning to do lots of fun stuff with the Mitchem’s kids including a sleepover. We are grateful to all who have helped us manage the kids for the last five months, especially Grammy and Grandpa, the kids will miss you both so much!!! We love you. Also, Thank you Nana for helping us manage Nolan during this time. We are so blessed to have such a caring and loving family. Not to mention the wonderful friends! The Lord has led us and guided us each step of the way and provided beyond our expectations and we are still leaning heavily on him to carry us the rest of the way home.
As always thank you for checking in on us we appreciate the prayers and notes on the guestbook!!!!
Love and Blessings
Sam, Nancy, Cooper, Kenzie, Nolan, Beverley and Stacey
(our little apartment is full right now)
Tuesday, July 15, 2003 10:49 PM CDT Day T 102
I seem to be getting slower and slower with the updates!!! Sorry! Time seems to fly most days and it is midnight before I know it. Our life revolves around medications and IV’s, blood draws, and doctor visits. Not much will change when we do head home to Colorado except the scenery and the doctors and of course the housing arrangement. I try not to get to excited about heading back home, but I long for the day to sleep in my our bed. Of course nothing has been said of when we will be released for home, but we hope and pray that it will only be a few more weeks.
Today was “Terrible Tuesday” and it really was not so terrible. We went in at 8:30am ran all our meds and saw Dr. Kurtzberg by 1:00pm. We would have been able to go at that point but they decided to go ahead and do the lumbar puncture (spinal tap). Dr. K was pleased with the results and does not plan for Nolan to get a shunt at this time. His opening pressure was 28 and closing was 11. This was better than when we first came to Duke. Nolan was a little trooper as always, he was awake for the procedure and did great, Daddy went in with him, and Mommy can not handle seeing what they have to do to him to do the spinal tap. It was nice to hear what Dr. K had to say about the MRI, she put our minds at rest and we feel better about things now. Now our only issue seems to be eating! We are trying anything to get Nolan to eat. He just does not want anything but fruit loops!! The speech therapist will be coming more often to help move things along. She worked with him this afternoon, but not much progress was made.
Peggy and Jeremiah will be heading home on Friday. Peggy’s husband Mike came in tonight and we all (the Mitchem’s too) went to dinner at this place that has a private room. This is the only way we can go out to eat, with other transplant families and someplace that we are isolated from the public. We have found several places around Durham that will accommodate us. I am very happy that Peggy is going home but sad because I will miss her so much. We have become great friends; we endured some of the worse of times together and shared many tears and many laughs. I don’t know what I will do without her here! Take care my friend, you mean the world to me. You made it!!! I will be seeing you soon!!!!!(Makeover!!!!!!!)
Well that is all for this evening. I will try to be better at updating! Thanks for checking in on us. Don’t forget to sign the guestbook! Also continue to pray for Nolan’s appetite to increase.
Love and Blessings
Sam, Nancy, Stacey and Nolan
Thank yous
Thanks Mom for the book and sending the card from Robert and Grace!
Thanks Robert and Grace for the card for Nolan and the money, I will get him something fun!
Thank you Kim Milne!!!! The cards are great! You are such an encouragement to me.
Thank you Peggy!!! I love the Hug sculpture! I will always think of you when I look at it!
Saturday, July 12, 2003 10:03 AM CDT Day T 99
I usually do not update much over the weekend, but wanted to give report on the test that we did get back yesterday and to ask for continued prayer for Nolan, he has been in a bit of pain since Thursday and has not slept well for two nights(meaning mommy has not slept in two days). The doctor confessed to really hurting him during the attempted spinal tap and said we probably should have given some pain meds Thursday, he was very apologetic and concerned that Nolan was is so much pain. He also told us how painful the spinal tap is, he himself has had one and said it really hurts, now thats the kind of doctor I like, he actually experianced something that he does to his patients. Yeah Dr. Szabolcs!!!! We gave him some pain meds yesterday and last night and he seems to be a little better today.
We had the Echocaridagram yesterday to check Nolan's heart for progression and the report stated that Nolan's heart is within normal range. Yeah!!!! We also improved our lung capacity from 90 o 107 ithout even really having to cry!!!(this was the cry test!) Praise the Lord for this blessing. After our morning of test we went in to clinic to run a med for GVH and to see Dr. Szabolcs. He had the results from the MRI, the findings were not what we wanted to hear but we were assured that this was somewhat normal at this stage of transplant and because of the tramendous stress Nolan was under during transplant and our PICU visits and that any damage or changes would not hinder his IQ or learning ability.
We will still have a few more appointments to finish off the 100 day studies next week, but we hope the week will not be a busy as last week.
We changed meds again and added a few, still trying to figure out what is going on in his tummy. He will only eat fruit loops now, not even really drinking the pedialyte anymore. We have all tried different drinks and eats with no success. Maybe he will just start eating again when he feels like it!!!! He is the boss you know!
Praise report!!!! As of right now I will be attending the Wedding of my brother-in-law John next weekend. Stacey has decided to stay for the week and be here next weekend. Also Beverley will be back to help out over the weekend!!! I am so grateful for such wonderful friends. I know Stacey and Beverley will appreciate the prayers while we are gone and they take over for a couple of days. It is a lot of work taking care of Nolan and we appreciate everyones efforts to help us out. Thanks David for loaning Stacey for two weeks and Thank you Dwayne for sending Beverley again!!!! Thank you Marybeth for the offer to come back, we may take you up on it soon. We have been so blessed with friends and family stepping out to help.
Again I ask for prayer for the Nicoll's family, little Douglas went to heaven on Friday morning. This is the only other family I know of in Colorado with children that have MPS. I do not know them personally but have spoken to them in clinic and followed their progress since our first days of Nolan's diagnosis, they were the first caringbridge family I started following and reading their journal gave me much encouragement before we got here for transplant. www.caringbridge.org/co/nicollbrothers
Hug your babies tight and thank God they are healthy and still with you. We are so blessed for the time we have with Nolan but understand he is God's child as are our other two children. We are just thankful that God entrusted Sam and I with these three wonderful creatures to teach and love and take care of.
Love and Blessings
Nancy, Stacey and Nolan
Another praise! I almost forgot, Sam will be back this evening!!!!! Yeah!!!! He will be here for the rest of July with the kids. Our family will finally be together for a few weeks. We are so excited and can not wait to be all together. We are so thankful to Grammy and Grandpa for taking such good care of them all summer and I am sure the kids will miss you so much when they leave.
Thursday, July 10, 2003 8:53 PM CDT Day T 97
Here is a quick update on our day. Nolan took the sedation well for the MRI and stayed asleep through the whole loud process. I stayed in the room with him even though he was sedated and did not know I was there. They immediately moved him to recovery for the spinal tap(I stepped out for this) but when Dr. Szabolcs put the needle in, Nolan woke up screaming, so they could not get what they needed. He will have it again next week under full anesthesia, he will also have a endoscope to look in his stomach to see if there is any irritation from the GVH. He has been very aggitated this evening following all the sedation he was given this morning for the MRI. He slept most of the day and is already down for the night. He is still not eating anything but Pedialyte and Fruitloops. I guess that is better than nothing at all. Tomorrow we hope to have the results of the MRI. We also have the ECHO, Crying test, Speech and Physical Therapy, very busy day!!!
Sam and I are still trying to figure out a way for me to attend his brothers wedding next weekend. It may not work out and I will be ok with this, I really want to see Cooper and Mackenzie in the wedding, it is their first! Cooper is going to be wearing a little tux and Kenzie and beautiful white dress. Sam is also in the wedding, I would like to see him in his cute little tux too!!!! I have bought a dress having faith that things will work out for me to go. As long as Nolan is stable I would feel comfortable about going. I would only be gone Friday morning thru Sun morning then we would all fly back to Durham as a family for the remainder of the stay here.
I will update again tomorrow when we get the results back from the MRI.
Thanks for checking on us. Please continue to pray for Nolan, that he will start feeling better and start eating again. Pray for me not to be anxious about the next few weeks. Also please continue praying for the other children here, another of the little ones we follow is in PICU in need of your prayers, Douglas Nicoll. Douglas and his brother Cam have a form of MPS called San Philipo similar to what Nolan has.
"Nobody has ever seen, heard, or even imagined what wonderful things God has ready for those who love the Lord." I Corinthians 2:9
Love and Blessings
Nancy, Stacey and Nolan
Wednesday, July 9, 2003 9:24 PM CDT *The new picture at the top of the website was taken two weeks before we left for Duke.
Day T+96
Today was clinic day. Not much changed from Monday in meds. We are scheduled for an MRI and Spinal Tap for tomorrow. Please pray for Nolan that he will take the sedation well and not have any problems. He is still very grumpy from the steriods.
Nolan was evaluated by Dr. Escalar(Dr.Szabolcs wife) the Developmental doctor yesterday. He has progressed well and is right where he should be in the neurological areas and the fine motor skills. He is still behind in the gross motor and speech areas. She has recommended we continue with three days a week of speech and two days of PT. No occupational therapy is recomended at this time, he may need more of this later. This is what we expected to hear. Also his hearing has imporved, but still has a little problem with the high frequency sounds. This is of some concern because not hearing these sounds can hinder how he learns to pronounce words.
Friday Nolan is scheduled for an Echo and a crying test. That will complete most of our 100 day studies. Next week should be a little slower.
Thanks for checking in on us and leaving the sweet messages, they mean so much. It has been a very hard week for me with the death of Jillian, the Martini's leaving and our leaving being postponed. Also many of our little friends are very sick and having a hard time. Please be in prayer the the many children here. We appreciate all the prayers that are lifted up for Nolan, we would not be able to make it without them.
"The troubles will soon be over, but the joys to come will last forever." 2 Corinthians 4:18
Love and Blessings
Nancy, Stacey and Nolan
Monday, July 7, 2003 9:15 PM CDT *****CHECK OUT TODAYS WALLSTREET JOURNAL**** OUR FRIEND MOLLY IS ON THE FRONT PAGE IN A STORY ABOUT HER JOURNEY WITH HURLERS!!!!!!
Day T 94
Sorry for no updates over the weekend! We have been very busy. On Thursday Dr. Szabolcs changed Nolan from cyclosporine(the one that makes him grow all the hair) to FK506(steroid for GVH{graft vs. host[donor cells are attacking his body]}). We went back to IV voriconizole(anti-fungal drug) and started TPN(cheese burger in a bag)Hoping this would zap the GVH that they think is going on. Sadly Nolan has not started eating again so today Dr. K upped the steroids again causing a split personality for Nolan, one minute he is laughing and bobbing his head the next he is screaming. The docs are all working to fix the problem so we are not delayed too much going home. As of right now we will be here about 4 to 5 more weeks. Tears came to my eyes when Dr. K said this but I am glad they want to make sure Nolan is in the best shape possible to go home to Colorado. Our days are much more complicated again with all the IV's, we have decreased some of the orals so atleast that part is easier.
We went to dinner tonight with the Martini's to bid them farewell, they will be leaving on Wednesday morning to go back home, they were on the unit with us and have been like family. The took special care of me while on the unit making sure I always had a meal and a place to crash while Nolan was in PICU!!!! Good luck guys, can't wait to see you in October. Miss you already!
This week will be a busy week, we are doing our 100 day studies, tomorrow we meet with Dr. Escalar, the child developement people, Nolan will be evaluated again to see where he is compared to his age.
Pray for this week that Nolan will start eating again and that the test done this week will have positive results. Pray for Stacey and I that we can keep up the busy schedule that is planned for the week. We will be in clinic everyday this week.
Will try to update tomorrow!
Another of our transplant friends has lost her battle. Early this morning (July 8th) Jillian went to be with Jesus. www.caringbridge.org/fl/jillian please stop by and give her family your prayers. We sat with her many days in clinic and will miss her greatly.
Love and Blessings
Nancy, Stacey and Nolan
Thursday, July 3, 2003 10:17 AM CDT Day T+90
Ten more days to 100!!!!!! Yesterday was a long eventful day! We dropped Marybeth off at the airport around 10:30 am then picked up Sam at 2:30 pm. We went to clinic late yesterday, but late is good we were in and out with in two and a half hours. That never happens especially on med day! Must be because daddy was with us. Nolan’s white count yesterday was 10.7!!!!!!! Yeah!!!!!! The boost of steroids must have knocked it down where it needed to be. Dr. Szabolcs is working hard to figure out what is going on with Nolan’s tummy and the eating issues. He still will not eat anything but pedialyte, so today they will decide if we go back to TPN. They talked about an NG tube, but with Nolan throwing up some, Dr. S does not think he would tolerate the tube. TPN seems to be the best solution. We have also gone back to IV voriconizal, last week was our first week on oral with no IV and this seems to be when all the problems started. So we seem to have taken a couple of steps back. Dr. Szabolcs was reluctant to talk about July 18th , he wants to get all these issues resolved first. Of course in my mind that means we probably won’t be going home that day. I am ok with this, a little disappointed but I too want Nolan to be as healthy as possible for the return trip to Colorado. We do have all the 100 day studies scheduled for next week. I am anxious to see the results. Our friend Jeremiah just completed some of his this week and has wonderful results, no progression of his disorder and some improvements!!! Way to go Jeremiah!!!!! This is the results we all came here for, to hear the words no progression! To think maybe we got to the disorder before it caused too much damage! I am so happy for Peggy and Jeremiah, can not wait to hear more good news.
We do have to go to clinic today for an IV med (they were going to change this med to oral yesterday but with all the tummy issues, Dr. S does not want to put more foreign stuff in the tummy) and for a couple of test to check for viruses ( I won’t mention where!!!) This is the first time in a long time that we have had to go to clinic everyday this week! I hope this does not become a habit!!!
Tomorrow we are celebrating the 4th with some other transplant families, Alex Martini and her family and Maddi Mitchem and her Family and Peggy Fulton. It sounds like a lot of people but Dr. Szabolcs said this was fine. Sam will be making his wonderful Beef Tenderloin with potato salad, baked beans, and rolls, he is such a great cook. It will almost feel like we are at home entertaining!!!!! Almost! The girls and I are going to go do some shopping prior to dinner, it will be fun getting out.
Well that is all for now, I will try to up date more after clinic!!
Love and Blessings,
Sam, Nancy and Nolan
Tuesday, July 1, 2003 9:01 PM CDT Day T+88
WC 17(something)
Boy that white count is driving us crazy!!!!! Well today was a better day for Nolan. No more throwing up, of course he has only had 10 oral meds and pedialite, oh and half a jar of oatmeal with applesauce. Yeah!!! It all stayed where it was supposed to. We did the "terrible tuesday" thing this morning so that Nolan could be checked out after our night at the Bopp room. We got to clinic around 10:00 am and finished around 3:30, not bad for a Tuesday!!! We saw Sue and Dr. K they decided that we needed to go up on the steroids to help increase Nolan's appetite. Nolan's weight was down some more today. Dr. K also mentioned that this could be the start of some GVH of the gut, but with the steroid increase it should help. So we had a bolus of solumedrol at clinic then upped the dose at home tonight. So we are now almost back to where we were when we got out of the hospital with steroids. If he has not started eating more by tomorrow they will bolus again at clinic. He seems to feel better today, but he has been playing catch up on the sleep, he has taken some nice naps today. Tomorrow is our clinic day so we will see what Dr. Szabolcs has to say.
Marybeth goes home tomorrow. Nolan and I will miss her very much. It has been fun having her here with us. Who will do the laundry and change the poopy diapers???? It has meant so much to us that so many of our friends have come to our rescue and helped us out. They come with open hearts and willing spirits. We have been so blessed. I think when they leave, they leave with a different take on what has been going on here the last five months, it is overwhelming. I am so thankful to Marybeth for coming, you made my week!!! You went above and beyond the call of a friend; cleaning, cooking, cleaning up throw-up, poop, toys!!!, giving IV's, drawing blood, rocking Nolan and being here to listen to my grips. Thank you.
Sam arrives tomorrow. Thank you Lord! I have missed him so much this time and can not wait to see him. I will pick him up before we go to clinic so he can enjoy med day at clinic, I would really hate for him to miss it!!!! His visit this time will be short but it won't be long until he is back to pack up the apartment. Wow did I really say pack up the apartment. Sshh!! I don't want to say it too loud. I am still tip toeing around until July 18th, because we are not gone until we are sitting on the plane, thousands of miles in the air!!!!
Thank you to all who have been praying for us today and checking in on us. We really appreciate it and are so encouraged by the guestbook entries. Please continue to remember us and the many, many children here going through the transplant process.
Thank you Lord for another day of caring for Nolan and loving him. I am blessed beyond comprehension. We have more than anyone could ask for yet you continue to pour your love and blessings out on us. Thank you for leading us to a place where you can use Nolan for your glory. Even on "Terrible Tuesday" for without it where would we be. Let us shout from the mountain tops what a wonderful Savior you are. "Though I am surrounded by troubles, you will bring me safely through them." Psalm 138:7 Amen.
Love and Blessings
Nancy, Marybeth and Nolan
Monday, June 30, 2003 10:42 PM CDT Day T+87 (I think)
WC 17.3 (8am)
WC 27.4 (10pm)
This will be short, Nolan had a fairly good day until about 8:00 pm this evening. He started throwing up(what little he had eaten)so we called the on call doc, he had us bring Nolan in to the BOPP room for some extra fluid. We are now back at the apartment and he threw up almost immediately after we got back. We have to draw labs in the morning and go to clinic tomorrow(Yuck) Tuesday is the worst day to go to clinic. Hopefully he is just fighting off a little bug. The White count shot up from 17.3 this morning to 27.4 tonight. He has lost a little weight and there is some talk of going back to TPN or an NG tube. Both are not a good choice in my opinion, but that usually does not count much. He ate about 200 calories yesterday and after throwing up tonight he had about 0 calories for today. Please keep Nolan in your prayers and pray that this will all resolve itself quickly and that it is a easy quick fix!!!! We are so close to going home and he has been doing soooo well. Thanks for checking in on us.
Love and Blessings
Nancy, Marybeth and Nolan
Friday, June 27, 2003 10:02 PM CDT Day T+84
WC 25
Yes the white count is on the rise again! Nolan has had a pretty crumby day. He has not felt very well and can not sleep for any length of time without waking up crying. He did throw up earlier so we think he may have a little bug, some of the other kids from clinic have had a similar virus this week. He does not have a fever yet and it seems to have only effected his eating and sleeping. He has only eaten about 4 oz of pediasure today and a couple of oz of pedialyte. It is kind of scary not knowing so please pray that Nolan recovers quickly. Visions of not leaving have slowly crept in my mind today. I pray that this will only be a minor little thing and we still get to leave on time. You never know around here.
Marybeth has been such a nice addition to our routine. She takes good care of both of us. Nolan just loves her and follows her around the apartment. This morning he sat outside the bathroom while she showered waiting on her. It is very cute. He waves and reaches for her all the time. We have adopted the name “Aunt Marybeth” for her. She will be staying a couple of extra days with us because Sam will not be able to get here until Wednesday evening. We will miss her when she leaves. It is nice to be taken care of!!!!
Even though Nolan did not feel well today he still participated for a while in PT. He stood with his new walker, he did not take any steps yet, but our therapist Barbara said he has to learn to stand and hold on first, then we will work on pushing it. He looks very cute standing with it, I took some pictures of course he will probably be running before I can manage to get them from the camera to the computer. I am kind of slow that way. But all in all Nolan did well today in PT, we cut it short because he just did not want to do much.
Thank you for checking in on us, we really do enjoy reading all the guestbook entries, they are always so uplifting and the Lord uses them to speak to me. Please continue to pray for Nolan and our family as we near our 100 day point. We continue to ask for prayers for Hermes family and all the children in PICU, BMTU, and clinic, we also have some friends that have made the journey home and are not doing so well. There are so many here who need your prayers, you do not need all their names God knows each and every one. Someday(when I am not so busy, haha) I am going to list them all with their website so you too can check on their progress.
“You have made the heavens and earth by your great power; nothing is too hard for you!” Jeremiah 32:17
Love and Blessings
Nancy, Marybeth and Nolie
P.S. Happy Birthday Peggy!!!!!
P.S.S. Please be praying for my sister-in-law and brother-in-law’s house to sell. It would be a great homecoming if they could be there when we get to go home. Here is the link to their house in The Colony, TX
http://www.realtor.com/Prop/1026507812?lnksrc=00045 Anyone looking to move??
Wednesday, June 25, 2003 9:56 PM CDT Day T+82
WC 17.7
Tonight my emotions run high, we are thrilled with the progress Nolan is making, his counts are astounding for this stage of transplant! The transplanted cells are doing there job, his liver is smaller, one of the symptoms of Hurler is enlarged liver and today Nolan’s was barley palpable!!! Praise the Lord our prayers are being answered. We also believe the clouding in his corneas has gone away. We talked with Dr. Szabolcs about going home and have been given the green light to make the arrangements to take Nolan home to Colorado. It looks like we may be leaving on July 18th. We have asked about flying through Dallas to attend my brother-in-laws wedding on July 19th. Szabolcs said this would be fine. Nolan will be allowed to attend a small family gathering of ten people or less as long as no one is sick. We would fly in on Friday, July 18th then fly on to Denver on Sunday, July 20th. We have not worked out all the details yet, but it looks very promising!!! I guess the eight hour wait at clinic today was worth it!!!!
As always, with an ounce of good there comes more bad news , Sam called me while at clinic and told me our little Greek friend from the Unit Hermes passed away this afternoon. Please be in prayer for this family, they recently lost their youngest son Aristofanis about three weeks ago. It is such a hard loss for all of us here at Duke. I can not even find words to express the sadness in my heart. They recently setup a website and I am sure would appreciate prayers, please sign their guestbook and express words of encouragement and prayers. We met Savvas and Marianna the very first day we arrived in Durham, they were the first people we saw as we entered the hotel and instantly we knew our children had a form of the same disorder,(MPS) we spent the next couple of weeks communicating in broken English both hoping for the same chance for our children. We pray blessings upon blessings for this family and that good will come from their heartache.
Thank you so much for checking in on us and continuing to pray for us it really means so much. I can not begin to explain my feelings tonight. Please continue to pray for Nolan, it can all change so quickly. I am going to go and hold my baby close tonight and thank the Lord for one more day with my Nolan.
Love and Blessings,
Nancy, Marybeth and Nolie
Monday, June 23, 2003 10:31 PM CDT ***Please continue to pray for Hermes and his family, they now have a website so please stop by and send them some encouragement!!
Hermes is still in PICU.
Day T+80
WC 32.3 Platelets 361,000
WoW!!! Twenty more days!!!!!!! I am holding my breath!!! 100 days is fast approaching and I am counting the minuets. Dr. Szabolcs has not given the green light yet but I am still optimistic about leaving July 14 or 15th. We are still quite concerned about the ever climbing white count, low grade fever and weight loss (about two pounds since Wed). He is having a hard time going to sleep and is very restless, he also has a higher heart rate than the past few weeks. Sam thinks the docs must be overlooking something and that he must have some small infection. All the cultures are still reading negative. He still has the runny nose so I guess this could all still be related to the virus!! Please pray that all symptoms go away and do not return. Nolan did great in PT today he was a little fussy because he had no nap today!!!
It is so nice having Marybeth here, having someone to talk to and go to clinic with. My spirits have been lifted. Nolan just loves having her here too. She has been doing cleaning, laundry, cooking, all the fun stuff! Again, I am actually eating meals!!! Yeah Marybeth! Hopefully she will not go home too tired!
Cooper and Kenzie have been having a great time at Grammy and Grandpa’s, we miss them terribly and can not wait until the end of July. They both have been a little under the weather, but I hear everyone is feeling better. I feel like I have missed so much this year. I know the Lord will bless us all for the sacrifices we have made as a family. We will all appreciate one another more.
I heard from Manny’s Mom Melissa tonight. She said Manny is hanging in there, he still needs your prayers. They have been in PICU for two weeks now. Please stop by their website and give them some words of encouragement, I KNOW how much it means to read the guestbook entries during a time like they are going through. www.caringbridge.org/sc/mannymiramontes
As always please remember all the PBMT kids, I get excited about going home but realize the journey will not be over, I have seen too many kids that have gone “home, home” and have to return back to Duke for one complication or another. We tread lightly for the next few weeks, months and even perhaps years, thankful for every moment we have with our special Nolan.
“Through the Lord’s mercies we are not consumed, because His compassions fail not. They are new every morning; great is Your faithfulness. The Lord is my portion, says my soul, Therefore I hope in Him.” Lamentations 3:22-24
Love and Blessings
Nancy, Marybeth and Nolie
Please be praying for my sister-in-law and brother-in-law’s house to sell. It would be a great homecoming if they could be there when we get to go home. Here is the link to their house in The Colony, TX
http://www.realtor.com/Prop/1026507812?lnksrc=00045 Anyone looking to move??
Friday, June 20, 2003 7:39 PM CDT Day T+77
WC 26.5 platelets 364,000
We ended up not going in to clinic today, Nolan’s fever went away and has not come back, praise the Lord! His white count came down a little but they are still watching it. We are drawing labs for tomorrow to check the white count and the cyclosporine level since we switched to oral, the level came back kind of high for today. We have had a very quiet day with PT this morning. He just does so well with therapy, we even moved from sitting on a ball to standing on his own today. It sounds like such a small thing for a 14 month old to be doing, but in our house it is worth a shout of praise. I sat watching Nolan play this afternoon and could not help smiling. He is so amazing, with all the horrible things he has been through and had done to him, he still smiles and laughs and plays and dances, he reaches for me and lays his head on my shoulder, he bobs his head to the music or my singing, he peers inside his shape a toy looking for the blocks, he crawls after me when I walk through the apartment and he sleeps so sweetly in my arms. Thank you Lord for the beautiful son you have given me. I stand amazed and in awe. What a wonderful creature you made. He is perfect in every way. Hurler Syndrome has not won. I give thanks everyday for the technology and doctors who spend their time researching ways to cure MPS. They are truly gifted by You.
I can hardly wait until Sunday when Marybeth arrives; it will be so nice to have someone to talk to. It has been really lonely here the last few days; I think being on isolation makes it even worse because we can not even go see our transplant friends. We just sit here in our little apartment playing or reading or sleeping or eating. I am thankful for the freedom to be able to eat and go to the bathroom when I please. It just gets a little claustrophobic after a few days. At least when Marybeth is here we can take turns going to the store or going to get something to eat. I hate to complain about such silly things when there are so many who would give anything to be cooped up in the apartment apposed to the hospital on the unit or PICU. Please just pray that I will be able to “Cast (my) burden upon the Lord, and He will sustain (me); he will never allow the righteous to be shaken.” Psalm 55:22
Thank you Chelle for the Tea, I went ahead and opened the box!!! I am dreaming of Starbucks!!!!
Please be praying for my sister-in-law and brother-in-law’s house to sell. They may be getting a contract on it this weekend!!!!!! It would be a great homecoming if they could be there when we get to go home. Here is the link to their house in The Colony, TX
http://www.realtor.com/Prop/1026507812?lnksrc=00045 Anyone looking to move??
“And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” Romans 5:5
Well that’s all folks!
Love and Blessings
Nancy and Nolie
Thursday, June 19, 2003 10:25 PM CDT Day T+76
No Labs!
Today Nolan started cyclosporine PO (by mouth). This is a good step forward, it means one less IV to run morning and night. The bad side is one more oral med morning and night! Hopefully we will be getting rid of some of the other oral meds over the next couple of weeks!!! He takes about 11 meds in the morning and 6 meds at night. Now only one IV and one IV push morning and night. Yeah!!!!! This still sounds like a lot but it is progress!!! Nolan also started running a fever tonight. It has come down for the moment but I am now checking it often to make sure it does not come up again tonight. We are still concerned about the high white count, but the preliminary results from the culture taken yesterday are negative. Keep praying that it stays negative. Well we just thought we had the day off tomorrow. Caryn is home and wanted us to come in tomorrow to see her. I think we are working on scheduling for 100 days, so of course we will go. Plus I still think they are stumped over the high counts, seems funny we prayed and prayed for the silly white cells to grow, remember “grow cells grow” and now we are praying for them to stop, our new saying should be “stop cells stop”
We had a visitor today, a friend of ours from Virginia, Elisabeth and her son Christopher were in town today and stopped by for a while. It was so nice to have someone to talk with, she didn’t get a word in hardly (sorry Elisabeth next time I will let you talk more, thanks for coming by, it really made my day!) I am so conversation starved! Nolan played and played with Christopher. He was in such a great mood today.
My spirits were lifted somewhat with the visit from Elisabeth and also we received a box of goodies today from Katy, Tx. It was so fun looking through the box and finding all the lovely surprises. Thank you everyone who contributed!!!
Holly: truck, outfit and movie for Nolan, GWTW DVD, bracelet, jelly bellys and book for me!!! And thanks for mailing all this stuff!!!
Ashley: stacking cubes for Nolan
David and Carla Redhair: for the Money (it always seems to come just when I need it, out of the four months I have been here I have only had to go to the ATM once, God is so Good)
Sandra: Armageddon on CD( Sam will enjoy)
Tammy Rajabi: Tea and Candy (yum yum)
Mackenzie (Strickland): The beautiful picture for Nolan
Margie Bunch – for the book, quarters, pens and crosswords(all will come in handy)
Ms. Ann: Beautiful heart for Nolan
Andrea M: for The Purpose Driven Life (I can not wait to read)
If I have left anyone off please forgive me, you know half my brain was left up on the unit!!!!
Praise report, Noah is out of PICU and seems to be doing well. Thank you all who have been praying for him and his family. Please continue to pray for good news. Manny is still in PICU and we have not heard any news on him in a while please pray for there family and for Manny to get better soon. Also please remember Hermes as far as I know he too remains in PICU.
“I will answer them before they even call to me. While they are still talking to me about their needs, I will go ahead and answer their prayers!” Isaiah 65:24
As always thanks for checking in on us and leaving encouraging uplifting messages, they always make my day!!!
Love and Blessings
Nancy and Nolie
Wednesday, June 18, 2003 5:04 PM CDT Day T+75
WC 29.7 platelets 309,000
Today is “weaning Wednesday” , we are steadily weaning drugs so we can get ready to go home. Dr. Szabolcs has returned and continues to be optimistic about leaving “around” 100 days, he said today not to count on leaving exactly at 100, I thought I would burst out in tears! He said scheduling may cause us to have to stay a few extra days. I am optimistic and plan to leave 101!!!!! Nolan’ white count continues to climb, cause some concern on the doctors part, we cultured his line today checking for an infection. Please pray that there are no infections brewing. Nolan looks great and everything else in the labs looks great. We have also graduated to only going to clinic two days a week, we only have to go in now on Monday and Wednesday, we still have to drop labs three days a week, but this is progress. I am soooooo ready to leave here. I have been close to tears all day today, no reason really just tired. This life here is so hard on the heart, many of our friends are struggling so, I have said it many times it is hard to explain what goes on here and the feelings you have. I just found out another of our friends from the unit is now in PICU, Hermes, the brother of the little boy from Greece that passed away a couple of weeks ago. My heart just bleeds for this family. Please lift them up and ask for special blessings for them. I know how hard it is just having one child here but having both your children go through this horrible process and to have already lost one, plus the added ache of the language barrier. I did not intend for this entry today to be sad or depressing but this was our day. Having Sam leave last night was very hard. Not that I can not deal with being here alone, I can, it is just very lonely!!!! Someone said just today, the closer we get to going home the harder it seems to be here.
Nolan is making more progress in therapy, he was even making some new sounds today!! We started speech therapy yesterday and will be working with him on eating and talking. We also had physical therapy yesterday, he just loves PT, they work him hard but he is doing things that a one year old should be doing. It will take some time, for he gets really tired when he has to stand or take steps. We are very hopeful that Nolan will have a “normal” life for a hurler child. We thank everyone who prays for Nolan and ask that you continue the vigil, we still have a was to go even when we return home to Colorado. Nolan will have at least three days of therapy and one to two days at Denver Children’s Hospital BMT clinic. Our life will still be very busy with medical “stuff”, but at least we can sleep in our own beds and have our whole family together. Amen!!!
Please continue to pray for Noah and Manny they both remain in PICU. One thing I have learned while here is the Lord reins. Through tough and dark times He is here all around. The parents and children are wonderful witnesses to the power of our God.
“Blessed are the pure in heart, for they shall see God.” Matthew 5:8
Love and Blessings,
Nancy and Nolie
Monday, June 16, 2003 10:10 PM CDT Day T+73
WC 22.4 Platelets 264,000
Nolan seems to be holding his own with all his counts. We are so proud of him. He is still fighting off his virus (the cold) but seems to be getting better everyday. He looks beautiful!!!! We are still looking at July 14th – 15th to start home. Wow, home, I can not really believe we could actually be going home. I am sure we will sit on pins and needles until mid July. Clinic was quick today. We don’t get many visits like that.
Sam leaves tomorrow night, I am always sad to see him go. I can not wait for our family to be together at home. Nolan and I will miss him so much. It is so lonely here when he is gone. Marybeth won’t be here until Sunday afternoon so we have a few days to go on our own. My neighbor Peggy and I try to take care of each other when we are alone, she is alone most of the time so we look out for her.
We talked to the kids tonight, they seem to be doing ok at Grammy and Grandpa’s. Cooper was sick today and sounded a little down tonight, I know this has been really hard on them, but they are such great kids and adjust to whatever we throw in front of them. I can only imagine what they feel. I know how I feel and I am 34 years old. I pray everyday for my babies to have good memories from this year and not remember the bad.
I am going to be brief tonight, I am also feeling a little down and want to spend every last minute with Sam before he leaves.
Thanks for checking in on us we really appreciate it.
Love and Blessings,
Sam, Nancy and Nolie
Friday, June 13, 2003 10:05 PM CDT Day T+70 (Yahoo, only 30 more days to go)
WC 24.4, Platelets 246,000
Happy Birthday Daddy!!!! Sam’s 38th birthday is today. We are so thrilled to be able to spend it with him. We let him off the hook today, he did not come to clinic with us, instead he stayed at the apartment and cleaned!!! I guess that was probably not the most fun he has ever had on his birthday but sometimes cleaning is more fun than clinic. (hee, hee).
Only 30 more days until we hit 100. Caryn is scheduling our 100 day studies for the week of July 7th, so if all goes well we will be leaving here around July 14th or 15th. We have been told that no one leaves at exactly 100 days; we plan to be a first!!! Nolan is doing well, even with his virus (the cold) we were put on respiratory isolation today until we test negative three times. It is kind of a pain and no fun because we can not sit in the fish tank room with our friends, but it is done as a protection for our friends so that we do not expose them to our cold.
There was some concern today as our white count was elevated, the doctors are being cautious but not to worried yet. He said that this type of virus HARDLY EVER goes anywhere but the nose. So we let it run its course praying that it does not move into something else. Nolan has been a little fussier than usual but he still plays and crawls and he is making wonderful progress in physical therapy. Today he took steps while holding on to our wonderful therapist Barbara. She works him hard and he takes a nap as soon as she is finished. Barbara comes to the apartment twice a week. Nolan also has occupational therapy once a week and he will start speech this coming week. He is working very hard to catch up. We are so proud of the progress he has made. The Lord continues to bless us.
Nana is leaving tomorrow, Nolan will be so sad as Nana holds him most of the day. She has been a wonderful help keeping Nolan entertained while we get stuff done around the apartment. Sam would have been lost without her while I was gone. Sam will be leaving on Wednesday not returning until June 30th. Nolan and I will be on our own until Sunday, June 22nd, my friend Marybeth with be flying in to help me until June 30th when Sam returns. It has been such a blessing to have many friends and family available to help me out here and just to keep me company. It can be very lonely and difficult when you are here by yourself, as you can not even go to the store for diapers or food. I am so grateful for my friends making arrangements to be here with Nolan and me, leaving their own children and husbands. Another friend, Stacy plans to come before we return home. Thanks guys, we could not make it without you!!!!
Please be in prayer for our little friend Noah, ( www.caringbridge.org/hi/noah ) he has again had another setback and the doctors are not encouraging. Pray that this parents Greg and Debbie will have strength to know what they should do. Noah has made it through so much, I know God has great plans for he and his family. Our thoughts and prayers are with them all. Also please lift up Andrew ( www.caringbridge.org/page/andrewshope ) he had his shunt placed but seems to still be having pain. Please pray for his parents that the doctors can help ease his pain and that they will be able to return home soon. They have been here a very long time. Andrew transplanted two years ago. This shows me that you never really breath easy again after transplant. There are so many others that we have come to know and love as we have traveled this road. Jeremiah, Brent, Manny (in the PICU www.caringbridge.org/sc/mannymiramontes ) , Alex M, Jillian, Jordan, Madison, Matthew, Jack, Jaxon, Harmen, Hermes, and the list goes on, I would list them all but we would be here all night. Please pray for all the children here on the unit and in clinic. We each have a story and feel Gods hand leading us. Each child is different, with different circumstances but we all have common threads, we all want a better life for our child. Some suffer more physical pain, or have more obstacles, but not one of us have had an easy road. No one has more pain or less pain, we all have the heartache that our child is suffering and we as a parent can not fix it. We must place all our trust, hope, and faith in the only one who knows all the answers, the Lord Jesus. Knowing he has the plan, he knows the pain and carries it for us, he hears our pleas and cries sweet tears for our children.
Have a beautiful weekend with your families, love on your kids and thank God for your little miracles.
Love and Blessings,
Sam, Nancy, Nana and Nolie
Wednesday, June 11, 2003 6:31 AM CDT Day T+68 (I think)
Well I am back!!!! I am sure you all have been waiting my return to get back to normal updates. Sam did a beautiful job updating while I was away. Thank you Sammy! (He really does not like to do the updates!!) My mini vacation was a very needed and welcome change of pace. As the plane pulled away from the gate in Durham, I let the last three and a half months float to the back of my mind, never leaving but putting it in a place so that “normal life” could resume. As the plane touched down in Denver tears of joy rolled down my checks, I am sure the young man next to me thought I was crazy. The beautiful snow capped mountains lay directing in front of me and I raced home to see my Cooper and Kenzie. I soaked in every moment. It was easier than I thought it would be to slip back into my role at home. Oh how I missed home. I slept really slept for the first time in months! I enjoyed taking the kids to school and picking them up doing all the things I have missed. I needed this time with them so much. Our week pasted quickly and as Saturday dawned the kids crawled in bed with me early and we watch cartoons all snuggled up together. Grammy and Grandpa came for Mackenzie’s Dance recital(she was the star of course) that afternoon and packed the kids up for the summer. I couldn’t help cry as they left with the feeling of another two months of separation. I just want my kids with me. I have already missed so much, they had such joy showing me all the art projects I missed, the presents from Coopers birthday I missed, the presents from the Easter bunny I missed, changes in so many things all that I missed. I know the Lord will bless them greatly for all they have endured along with us on this journey. They were excited about the summer at Grammy’s and Grandpa’s but I was sadly reminded why they were spending the summer there. I spent Sunday and Monday with friends, keeping busy until I could return “home” to Nolan, Sam and Nana. Thank you Pastor, Beverley, Stacy and David for Sunday, I laughed so hard my checks hurt. I really needed that. I miss you already. Thank you David and Stacy for taking care of Sam’s car for me!!!! Thank you Kevin for letting me sing on Sunday, it was a joy and honor to praise my Lord with all of you.
Yesterday as I walked out of the airport and the humidity of North Carolina hit me in the face, I was quickly sucked back through the looking glass into the surreal world transplant. I rushed to the car to see my little fuzzy faced baby. Yes cyclosporine hair has hit. I knew it would. Nolan now has a fuzzy little nose, cheeks, forehead, upper lip and side burns. It was kind of alarming but once you get used to it, it is sort of cute in an Eddie Munster sort of way. I love being back with Nolan I missed him more than I can say, Sam too. Monday we were told that his viral battery ran a couple of weeks ago has grown a virus, he has a cold, only in his nose the doctors tell us, but I can not help but worry, colds can always turn into something more severe. Please pray that this virus will pass quickly with no complications. We have been very fortunate that Nolan has not had any infections or viruses until now and we pray that this is the only one. I spent last night with Peggy and Jeremiah in the BOPP room on the unit (this is were you go in the middle of the night when something happens that you need a doctor) Jeremiah has been having severe pain since he had surgery on Friday. Shortly after I arrived home Peggy had to take Jeremiah in and I went along for support. It is very hard to be here by yourself. We both cried as we hovered over Jeremiah crying out in pain not being able to help him. The doctors do not really know what is causing his pain and only gave him a shot and sent him home. Sometimes it is so frustrating watching our children suffer not being able comfort them especially when the docs don’t know either. Please lift up Jeremiah today that he may get the relief he needs and for Peggy that the stress will not take its toll.
I return with such mixed feelings, I want so much to be with Cooper and Kenzie and we even considered bringing them here for the summer but the risk of Nolan getting something goes much higher with them here and how fun would summer be cooped up in a tiny apartment. The Lord has provided wonderful grandparents to love and care for them while we can not be together. Thank you Grammy and Grandpa!! It does not help the ache much but the Lord keeps whispering to me “not much longer, just a while”. Someone shared something with me not long after coming here and I would like to share it today.
I've learned:
-that you can sometimes be a great witness for the Lord without ever saying a word
-that sometimes laughter really is the best medicine
-that there are a lot worse things than death
-that watching your child suffer is the most difficult thing a parent has to do.
-that the best doctors are usually people you'd want for best friends
-that we have children with the idea that we will teach them about life, when they teach us so much more
-that no matter how much I love my children, God will always love them more
-that the miracle of dying can be as beautiful as the miracle of birth
-that God never promised it would be an easy journey, just that He'd be with us every step of the way
-that we will never be able to answer our most desperate "whys" in this life
-life can deal us the cruelest blows when you least expect it
-grief never ends, it just gets different
-that God does give us more than we can handle, but never more than He can handle for us
-the more we think we understand God, the less we probably do
-suffering can make your faith, love, and hope stronger, if you give it to God
-nothing feels better than holding your child in your arms
-sometimes the smallest in body are the largest in spirit
-when your child is sick, nothing else matters
-that a healthy child is not only a blessing, but a miracle
-sometimes when you think God is the farthest away, He's really the closest
-real friends stick by you, even when the going gets tough
-that most people are extremely generous and want to help
-you can feel joy and sorrow simultaneously
-you can never take too many pictures of your children, sing too many lullabies, hold them too long, or love them too much
-no matter how terrible a situation, God can bring good from it. God is the good in everything
-anywhere can be "home" if you're there long enough to make good friends
-sometimes your have to stop asking "why" and ask "what"-"What does God want me to do with this situation?
I've learned that you have to go through Good Friday to get to Easter.
It is good to be back.
Love and blessings,
Sam, Nancy, Nana and Nolan
Thank You's
-Rose Marie for the Cash we appreciate it so much!!
-Witchita Falls - Texas Department of Human Servies for the Cash we are so grateful.
-Georgann for the Check, Thank you for thinking of us.
-Clint, Lorie and the boys for the Scooby Doo and the book, Nolan loves it and I love the book, bless you.
-Linda Burfield for the books for Nolan thank you.
- Paulett for the book and jelly bean(Sam and Nana enjoyed them before I got home)
-Grammy and Grandpa for the Angel toy
-Beverley for the basket, pants, braclet, dinner and for making my stay at home so wonderful!!!!I love you.
- As always I would hate to exclude someone, so I thank you even if I can't remember where something came from, the Lord has used you to provide for us and we are forever grateful.
Friday, June 6, 2003 8:19 PM CDT T + 63
Sorry no updates in the last few days!! Very tired AND relatively unchanged for Nolan.
He is still off the TPN and moving along great.
Hemoglobin steady at 10.7
White Cells steady at 15.1 (No cell growing drugs almost 2 weeks)
Platelets 172!!
All looks very good and his body is doing everything on its own. Kidneys, etc all systems go. The only thing we have been struggling with back and forth is his blood pressure which seems to be a common thing because of the steroids.
I visited little Matthew and Jack on the unit tonight. Bless those little troopers! I have said it before and I will say it again. These little guys are amazing the way they go through what they do and still can maintain a smile through it all. Please keep these little guys and their families in your prayers. Also continue to keep little Noah in your prayers. He has made some progress in the right direction!! Pray for his tests to come back above 10% on donor. Also please pray for our friends Peggy and Jeremiah. They had to stay overnight in 5100 from surgery. Pray for their comfort and that they will be home tommorrow. So many kids and families, pray for them all, Jesus knows who they are and what they need.
Nancy, God bless you. I thank God everyday for putting you in my life and giving me a family and an example of a Godly women. Neither of us are perfect but each day of my life I realize more and more the incredible gift a Godly women is. You enjoy your other children and hurry back soon. I love you very much.
Goodnight!
Sam Nolan and Nana
Tuesday, June 3, 2003 10:08 PM CDT Day T + 60
Well this is Sam again signing in. This is not a test. I will be signing in for at least the next week then will disappear from the website again. You can all then enjoy the “Nancy Novels” that you have come to expect!! I say that with much love and sarcasm of course. Funny thing is, I think I will write a short novel tonight as lots to talk about.
We met with Dr. K today as Dr. S is out of town. We had to wait awhile but got to sit down and talk and ask lots of questions so it was very helpful. I have been worried about Nolans heart rate but was reassured it was okay and I should not be concerned. Overall Nolan continues to blow us away with his strong little body. He continues to do wonderful and pretty much nothing but smiles come from his little face. A couple of key notes!
White cell counts steady now at 12.5. This is wonderful, as he has not had any cell growing drugs in almost two weeks. Also his red cells are doing very well.
More importantly, his platelets are now 149K and climbing. He is doing this on his own with his new stuff!! This is awesome and is really the best indicator that the new bone marrow is functioning properly.
Also he now has the enzyme that was missing and it is at 25% of normal levels, which is wonderful.
Also news he is now off TPN as of tonight!! I made up this big long list of things that he was eating like steaks, baked potatoes, slurpies, etc and Dr. K said he could come off TPN. Kidding about the list but true about no TPN. He is eating enough on his own not to need it. This is wonderful news not only because it is the biggest pain to administer but he is now much more FREE to play, especially in the mornings and he is much easier to comfort at night without dragging around his big black bag!!
All in all we continue to be in awe of his recovery and his strength. We thank God for his progress and pray that He has big things for him here on earth and in our future.
It is an awesome thing being here. It is by far the heaviest burden I have ever faced yet the most rewarding. You see the hand of God at the bottom and the top. You see God carrying children through pain and suffering with a smile on their face. If you ever thought that children are not a witness for Christ you are wrong! Sometimes God brings them Home, sometimes he lets them stay in our care. Either way they are cared for. You see first hand how fragile life really is and how much we take for granted. God grant me the strength and the wisdom to see life through the eyes of a child. For it is the eyes and the heart of a child that truly get to experience You. Oh how I pray for blind faith.
I have too share something that happened too me in clinic today. I was on a conference call for my work and there was a child really screaming down the hall. In any event the people on the other end of the call could hear it. Someone made the comment “is someone dieing”. I almost had to put the phone down as I thought too myself, you have no idea. I read about several children today that lost their struggles. I sat in clinic and listened to the struggles that our neighbor/friend here is going through. I look at the names and websites of children in the ICU and again say you have no idea! I wanted to leave a message on a website today of one of the children that lost their struggle but a verse in the Book of Job in the Bible came to mind that words are sometimes “miserable comforters”. As Jobs friends tried to encourage him and fix him with “advice” it only reinforced that sometimes we show the greatest command of language by not using it but by only listening and turning to prayer for advice instead.
I don’t know exactly why that struck me as it did. I only know that I have now turned twice to a particular verse in the Bible tonight. It is in Matthew 26 where Jesus is in the Garden with his disciples. He is overwhelmed with sorrow and falls to his face to pray “My Father if it is possible, may this cup be taken from me. Yet not as I will, but as you will”. This scripture speaks volumes to me. I think that Jesus decided no matter what his fate he would submit to his Fathers will. I find comfort in that. I do not understand it but I know that just as Jesus had his Father in the garden with Him that night I have my Father with me now.
God Bless.
Sam, Nolan and Nana.
Sunday, June 1, 2003 8:56 AM CDT Day T + 58
This is Sam! Well I got in last night and Nancy left this morning to go to Colorado for 10 days. She is really excited about going to her home she has not seen in three months but probably mixed emotions on living Nolan here with me! Have no fear honey I will take care good care of Nana and Nolan! Just keep taking things day by day and keep praying for Nolans recovery.
In any event Nolan and Nana are sleeping in the chair right now. He was very fussy last night and this morning but I am hoping only because he had to go to the bathroom! He seems to be feeling much better this morning.
No labs or clinics today thus no numbers to share. I will be in touch with more information tommorrow!
God Bless and Keep Praying for my family.
P.S. Nancy do not worry and enjoy being home. Nolan is in the hands of Jesus not mine.
Love Sam, Nana and Nolan
Friday, May 30, 2003 6:36 PM CDT Day T+56
WC 15.5
Platelets 101!!!!!! woohoo
Nolan has made a milestone, 100 platelets is a huge deal! He has not had GCSF in over a week and he is building platelets, and white cells and red cells by leaps and bounds. We are so proud and excited!! He looks beautiful. He is starting to get that cyclosporin hair. I fear when I came back from Colorado it will be all over him. I will try to get new photos on the page soon!!!!
But with every celebration we have there seems to be one more bit of grief around us. This week we have lost two more children on the PBMTU. Jose David passed away eariler this week and then early this morning Aristophanis lost his battle in PICU. With each child that passes it seems to touch my heart more and more reaching closer and closer. This makes 7 children since we came here in February. Please remember these two families as they grieve. Also please remember all the bone marrow families during this time, it effects us all so much, we grieve for their lose and cherish the moments with our child even more than before. Say an extra prayer for Aristophonis family, his brother, Hermes who transplanted the same time will be undergoing a 2nd transplant next week. (Hermes and Aristophonis have MPS III - San Philipo) Their family is from Greece and the parents do not speak much english, I am sure this is most difficult for them as they must remain at the hospital with Hermes as he fights for his chance at life. "Though he brings grief, he also shows compassion according to the greatness of his unfailing love" Lamentations 3:32 Please pray for His compassion to be shown greatly on this family tonight and the many days ahead.
We visited the unit today and dropped in on Jack (one of the hurler babies I have mentioned before)before he got his transplant. He is so cute. Today is a day of celebration for them, please stop by and give them some praise. www.caringbridge.org/mo/jackshuler We also stopped in on Matthew our other hurler friend, he is day T+7 and doing great. Please pray the mucositis will not get him down. You can send him words of encouragement at www.caringbridge.org/md/matthewsackett They both could probably use some good cheer as this week on the unit was not so joyful.
Also please remember baby Noah,he remains in PICU. www.caringbridge.org/hi/noah I pray so hard for them, I know God has a miracle for Noah. Pray for Gods will for this family. Please stop in and share some words of faith and encouragment with them.
It seems that there has been much going on here the past week. I pray for God's grace to abound. Sam will be arriving tomorrow night and I will leave on Sunday morning. I leave with mixed feelings. I am anxious to get away for a few days, the stress here really takes its toll. One minute you are on a mountain top the next in the valley. The Lord has been so faithful to me, bringing me comfort in the toughest of times. Some times when the tolerance wears thin I know I have not been on my knees enough that day. Pray for Sam as he and Nana will be here caring for Nolan for 10 days. Pray that he remembers how all the meds go!!!! I am so thankful and grateful for all the encouragment I am given through cards, phone calls(even when I can not talk but a minute,sorry Holly),e-mails, guestbook entries and visits. The longer we are here the harder it is getting emotionally. I pray 100 days comes quickly!!!!! I have enough gray hair!( I have to color almost every other week!!!!!)
I am sorry to have shared such depressing news today, I just wanted as many people to pray as possible for all these families, including mine. Thank you.
"The thought of my suffering and homelessness is bitter beyond words. I will never forget this awful time, as I grieve over my loss. Yet I still dare to HOPE when I remeber this: The unfailing love of the LORD never ends! By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day." Lamentations 3:19-23
Love and Blessings,
Nancy, Nana and Nolie
Wednesday, May 28, 2003 10:09 PM CDT Day T+54
WC 18.4
Dr. Szabolcs says Nolan looks like the poster child for Cord Blood Transplant!!! I guess that means we are doing well. Can you hear the big sigh of relief? All the numbers look very well. We are so pleased that things are going in the right direction. To have been all the way on the other end of the spectrum to where we are now. I have to say I thought we would never get to this point. Praise the Lord!!! We prayed for this, and he answered us. I just love that. "And whatever things you ask in prayer, believing, you will receive." Matthew 21:22 Thank you Lord, you have been so loving and good to us in this difficult time our family has been going through. Bless us all for the things we have endured, especially Nolan and all his body and spirit has been through. We praise Your Holy name and shout it from the mountian tops that You are the Lord God Almighty. Father continue to rain blessings down on us.
More things to praise about, we have graduated to labs on Mon, Wed, Fri. only!!!! We only have to go to clinic on those days also. Yeah!!!! Nolan deserves this, he worked very hard the first 45 days!!! Please continue to pray for us and Nolan, we still have a ways to go and I am sure all these prayers have a hugh part in why he is doing sooooo well!!! Join us in giving thanks for the many blessings we have been enjoying.
Before I close, please remember to pray for baby Noah www.caringbridge.org/hi/noah I am so thankful to all of you who have been praying for them and checking in on the website, I know first hand how much it means to see all the guestbook entries, even from people you don't know. PICU is a hard place to be, pray that they return to the unit quickly. Also please remember Andrew, he had his shunt placed and a port yesterday. He is recovering at the hospital. www.caringbridge.org/page/andrewshope
--Thank you Aunt Pat, Jeannie and Jimmy for the money, I am so grateful. God Bless you all.
--Thank you April and the Second grade sunday school class at First Baptist Church Katy for the beautiful get well wishes and toys for Nolan. He really enjoys playing with the toys and looking at the pictures, You guys are the greatest. We miss you and love you.
--Thank you Kim Milne the cards are great!!!! I love going to my mailbox at the apartment!!!! You have been so good to keep up with me over the last three months!! I miss you! and Yes, group lunch would be great!!!! Let me know when!
--Thanks Mom for the clothes they are great and needed!!!
--Thank you Thank you Paula for the airline ticket home!!!! I can not thank you enough, I get to go home for 10 days!!!!!
Love and Blessings
Nancy, Nana and Nolan
Tuesday, May 27, 2003 3:26 PM CDT Day T+53
NO LABS TODAY!!!!!! (Yesterday’s WC 19.4)
Sorry for no update yesterday, I was adjusting back to just me and Nolan. We dropped Beverley off at the airport yesterday morning. It was sad to see her go, she was such a big help to me. Nolan was kind of fussy yesterday, I think he was missing his Beverley!!! Anytime you want to come back!!!! We would love to have you! Yesterday Nolan’s white count was up more, 19.4. I asked again is this normal since he is not on GCSF. I am still concerned about an infection brewing. Gill, the NP we saw yesterday was not much comfort for me, typical man! The Segs or Segmented Neutrophil was elevated, but he said he could not tell just from that number alone. Thanks Gill. So he still did not want labs for today. I guess I will wait. No fever, I am probably just being a little fanatical about the whole thing. There are so many kids on the unit and in clinic having problems that I am scared for Nolan. That worry thing, I know I need to practice what I preach!!!! “Peace I leave with you, My Peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.” John 14:27 “No evil shall befall you, Nor shall any plague come near your dwelling; For He shall give His angels charge over you, to keep you in all your ways” Psalm 91-10-11 Please pray that I can trust in these words and have that peace!! It has almost over taken me. I think before now I was more prepared for the possibility of something going really wrong. It is now that Nolan has engrafted and has the new enzyme and he is doing soooo well that I am scared of something going wrong. Nolan is sleeping some this afternoon so I thought I would update early. We have to leave to go pick up Nana at the airport around 4:30. Nolan will be happy to have his Nana back to hold him. I am sure she will be glad to see him too, last time she saw him he was sedated on a vent in PICU.
It has been a nice day to stay in and rest. I am feeling a lot better. We are now more than half way to 100 days!!!! It still seems really far away. I hope having Sam here for most of that time will make it go by quickly. The Lord has blessed us so much, providing loving grandparents to take care of Cooper and Kenzie for the summer so that Sam is free to come be here with us. Thank you Grammy and Grandpa.
Nolan will start PT and OT on Thursday of this week. We are excited to get him started. He is crawling all over the place. I have a hard time keeping him out of the trash! He seems to be doing very “normal” baby things!!!! Yeah Nolan! It is hard to believe less than a month ago he was on a ventilator! My, how things can change. We have also been practicing eating. He can put the fruit loops in his mouth, but has trouble keeping them there, it is quite cute watching him try to get the silly things in then the next second have them come flying back out. He wears more than he eats. He still will not take anything by spoon, it has to be his bottle or his fingers.
I will stop rattling on and close for today. Please remember to pray for Noah, he is still on the oscillator in PICU. There are also several other kids from the unit in PICU, 5 all together, please pray for them and all the kid on the unit and in clinic. As always thank you for checking in on us and praying for Nolan. We could not do this without the continued support of love, prayers and well wishes we receive everyday. Please stop by and sign the guestbook!!! We love to hear from you.
Love and Blessings,
Nancy and Nolan
Sunday, May 25, 2003 7:11 PM CDT
Day T+51 (Sat.'s counts Day T+50 WC 13.4 Plat 43 Hem 10.6)
WC 17.9
Nolan's white count took a little jump today. This could be really good, he is not on GSCF so he made this himself. White count(17.9), platelets(70), and Hemoglobin(11) all jumped today. Yeah Nolan!!! It also caused me some worry, as white count would go up if he had an infection. Shelly, the NP assured me that everything looked very good on his labs and she quizzed me about his behavior, she saw nothing to fret about. I worry because as it turned out my allergies were a little more than just that, I went to the urgent care clinic yesterday with a slight fever, runny nose, stopped up ear,sore throat and headache. The doctor felt it could be viral or a sinus infection. I am hoping more for the sinus infection. I was given an antibiotic, some nose spray steroids, cough syrup, and zinc. I do feel some better today, but not quite up to par. I pray that Nolan does not show signs of infections or virus. I am VERY nervous about this, he is doing so well. I have already taken his temperature a couple of times, 37.4C (this is pretty close to normal for him) He just does not need any upset at this point. Pray that I am worrying for nothing.
Beverley is leaving tomorrow. We will miss her so much, she has been such a great help to me and Nolan. Nolan will miss her too, she plays with him and has held him a lot while I have been sick. In addition to entertaining Nolan she has cooked, cleaned, laundered, bagged mounds of trash(we have at least one 13 gallon bag a day sometimes two plus Duke infusion boxes) and kept me company. She was sent by God as my guardian angel to care for us. I can not thank her enough for selflessly giving. She was good medicine for me, we laughed a lot!!! I will be forever grateful!!(especially for the laughs!!!)
Nana will be arriving Tuesday night, so we won't be lonely for long. Then Daddy will be here Saturday!!!! I am so excited and nevrous about going home. I will leave next Sunday morning. I pray that things go well this week with Nolan so I feel comfortable about leaving. I feel I really need to be home for a few days with Cooper and Kenzie. I do not return until Tuesday, June 10th. It seems really long, but Sam has made me a schedule(just like Sam to have a list for me) of things that need to be done while I am home!!!!!! So I am sure it will fly by and I will be back here before I know it!
Please pray for Noah, they once again have bad news, Noah was taken to PICU last night and placed on the osillator. I am sure they could use your prayers and words of encouragement. www.caringbridge.org/hi/noah
"Blessed is the man who trusts in the Lord, and whose hope is the Lord. For he shall be like a tree planted by the waters, which spreads out its roots by the river, and will not fear when heat comes; but its leaf will be green, and will not be anxious in the year of drought, nor will cease from yielding fruit."
Love and Blessings,
Nancy, Beverley and Nolan
Friday, May 23, 2003 10:59 PM CDT Day T+49
WC 12.3
We are still growing cells without the assistance of GCSF the cell making drug. Nolan has been holding his platelet level and hemoglobin since last Thursday. Way to go Nolan!! Today Beverley got a chance to see clinic and did she get a real taste! We had a nice 6 hour wait. We did run a few test, because of the runny nose and slight cough. Nolan had a chest x-ray and a viral battery test. They both came out fine. The chest x-ray had a nice little "surprise' as Dr. Szabolcs said, he came in with Nolans x-ray in hand and showed me a heart shaped out of his central lines around his heart. Doctors get a kick out of the strangest things!!! It was a nice little surprise! Anyway Nolan still has a runny nose and seems to be coughing more, please remember him in prayer, specifically asking for the cough and runny nose to go away and no virus or infection to form. It is the little things like this that really get me to worrying. I am also not feeling that great, I think the allergy season is upon me. My ear has been stopped up and my nose a little stuffy too. Add me to the prayer list also, I can not get sick. My biggest fear is that I will give Nolan something to make him sick. I know I need to hand it over to the Lord and rest my mind, but I am having a really hardtime doing that. Fear has crept in and stole my peace. If nothing comes up over the weekend we do not have to go in to clinic again until Monday. We only have to drop labs. Yeah!!!!
Please continue to pray for Noah, they did have some very encouraging news today!!!! www.caringbridge.org/hi/noah
Jeremiah also needs continued prayer, his mother,Peggy is concerned that his disorder has already progressed, this is a very scary time for her as she has to wait for medications to be weaned and test to be ran. Peggy and I have become close over the last couple of months of dealing with transplant together. It has been a blessing to get to know her and share our fears and joys. Sometimes we have way more fears than joys. I ask you to specifically pray for Peggy to have peace, she is facing what all of us fear for our own children, that the transplant cells will not make it to the brain in time. www.caringbridge.org/ia/jeremiah
"Trust in the Lord with all your heart, And lean not on your own understanding: In all your ways acknowledge Him, And He shall direct your paths." Proverbs 3:5-6
Lord, I am such a creature of habit and comfort. Forgive me when I cling to what is familiar and safe. More than anything, I want to be obedient and available. Give me the courage to come out into the deep where I cannot touch bottom and must trust where you are taking me. When I can not see tomorrow, let me feel your hand in mine and rest in the knowledge of your goodness. I praise you Lord for my beautiful son and place him in your hands tonight. Amen.
Love and Blessings,
Nancy, Beverley and Nolan
Thursday, May 22, 2003 9:07 PM CDT Day T+48
WC 11.9
Today was our first day we did not have to go to clinic!!!!It was so nice to stay home, it is a very rainy, cool day here and no one should have to get out in weather like this. We did have to run an extra dose of Cyclosporin this afternoon. The docs can't seem to get the right dose for Nolan, it is either too high or too low. Maybe tomorrow it will be just right! Nolan is starting to crawl a lot more, he made it all the way across the room today, it was a real site. He is also trying to pull up, but I think he is just too weak in his legs. Nolan has had a runny nose today so please pray that it is nothing, if it is still running tomorrow they will do a viral battery test. Not a pretty test, they stick a tube up Nolan's nose and suck out gunk, he really enjoys this. NOT!
It is so great having Beverly here, she is a great cook!!! I actually had a real dinner tonight. It is so much easier with someone here to get things done. I am so grateful to have her here. I hope she does not go running and screaming home after a few days with Nolan and me!!! We are quite the mess.
I am saddened tonight, I have just read that Kendal our next door cell mate on the unit passed away today in PICU. Kendal was 16 and we always loved seeing him walk the halls on the arm of a pretty nurse. Please pray for his mother and family as they grief for this loss.
"Then Jesus went about all the cities and villages, teaching in their synagogues, preaching the gospel of the kingdom, and healing every sickness and EVERY disease among the people" Matthew 9:35 Lord Jesus, we praise you for who you are and all you have done for us. O God, we know that you are able to save Nolan and resuce him. I ask you to heal him for your glory. Father I come on my knees before you asking for healing for our sweet Nolan and many other children we have met here. As we walk through this fire, conform us to you. Strengthen our spirits and stay close to us in the darkness. Comfort this family who has lost a sweet child. Give them peace and strength for the days ahead. I love you Lord and prasie your Holy name. Amen.
Love and Blessings
Nancy, Beverly and Nolan
Wednesday, May 21, 2003 11:49 PM CDT Day T+47
WC 11
I just spent an hour typing in an entry and the silly computer erased it. So this will be much shorter!!!
Nolan is doing well. Dr. Szabolcs is pleased with our 100% engraftment and the fact that Nolan's blood type is already the donor type (B+) also that he is making his own red cells and platelets. We also found out a few days ago that Nolan is producing the enzyme that he has been missing. Praise the Lord. We could not be happier with the results of the transplant so far. I pray that things continue on the upward swing.
Beverly arrived this evening and we have been enjoying her so much. Nolan seems so happy to see her. She will be here with us until Monday. It is nice having someone to chat with and say goodnight to. Thank you Pastor Dwayne for sharing your wonderful wife with us. You both have been such a blessing to us, if not for Beverly we may have never come to Mountain View Southern Baptist Church. Beverly was one of the first people I met in Colorado(at a crop)and invited us to church. We have felt so welcomed and loved by ya'll. You have been there to support us during one of the most difficult days we have ever faced, when we were told about Nolan's disorder. We came to Mountian View thinking God led us there to help the church grow but we now know we were led there for us to be helped and to grow. We are so grateful to the church for all the support and love coming our way. I am especially grateful to all the people cooking for my family while I am away. I am sure even my kids would get tired of McDonalds after awhile.
Please continue to pray for Nolan and our entire family, It seems to get harder and harder to be away from them. I miss them all so much. Please feel free to sign in on the guestbook, it seems that when things are going well people slack off a bit with the encouragment, I still need it I love reading the entries they are a lifeline to me, it helps me feel connected. I gain a lot of strenght from the words you guys write.
Sammy, I miss you so much. I am so thankful to have such a wonderful man in my life. You are an awesome father and husband. Who would have ever thought you would be the Godly man you turned out to be (just me and God) I always knew who you really were. I thank God everyday for you, he gave me the best gift ever in you. God works all things for his good, I know there is good coming from this. I hate being a single mom as much as you hate being a single dad. I pray someday soon we will all be a family again under one roof. I love you!!!
Thank you Elizabeth for the book and phone card, you are such a blessing to me. You always have uplifting entries and words of love for me. God had a plan when we met, though it was brief it had a purpose. He has used you greatly to comfort me in some of the darkest hours. Thank you for letting God do his thing through you. I hope someday I will again have the opportunity to host you and your family in my home. My door is always open.
Love and Blessings,
Nancy, Beverly and Nolan
Tuesday, May 20, 2003 9:27 PM CDT Day T+46
WC 28
Nolan seems to bounce between 11 and 30 on the white cells. This is not too bad, the doctors would like to make the swing a little smaller but he is already on a very low dose of GCSF(this makes the cells grow)but when we take it away his white count drops. They are thinking he maybe experiencing some pain when the cell growth is higher, he has been extremly fussy on the nights that I give the GCSF, it can cause bone pain. His heart rate went way up last night and he cried a lot, not really ever getting comfy. Tonight he seems to be resting better but it is only 10:30 est. and he usually fusses after midnight. Nolan also had his GvH rash today, he was really red. Pray that is stays under control. Today was to be our day off from clinic, but when I told Caryn (our NP)what a rough night he had she wanted us to come in for a quick check, so we were in and out in an hour, that is a record. Tomorrow is our clinic day when we see Dr. Szabolcs and get some IV meds that we do not run at home, so we will be there for several hours, hopefully things will run smoothly, Caryn ordered all our meds today. Thanks Caryn!!!
Tomorrow we have a special guest coming from Colorado to visit for a few days. Beverly Bartley, our pastor's wife is coming in tomorrow to help out. I am so excited to have some company. It gets lonely sometimes, you know with all the conversations I have with Nolan and all. He is great company but hasn't mastered chit chat yet!! AAHHH is about all he contributes. Beverly will be here until Monday, Mom will be coming in on Tuesday of next week, then Sam will be back the following Saturday. Then I leave for 10 whole days. I can not believe I will leave Nolan for that long. It scares me that I won't be here to see him everyday. I am very excited about seeing Cooper and Kenzie and doing all the fun mommy things, I hear my week will be very busy.
Nolan is asleep so I will sign off for now and get some sleep myself. Thanks for checking in on us, we really appreciate it!!!
Continue to pray for Nolan as his body grows cells and puts them where they need to be. Remember all of our transplant friends on the unit and off.
Love and Blessings
Nancy and Nolan
Monday, May 19, 2003 10:28 PM CDT Day T+45
WC 11.6
Nolan is doing well today, hopefully we will not have to go to clinic tomorrow. If our platelets hold out we will make it. I wanted to add a couple new hurler friends websites, they are new to the unit and could probably use the encouragement, so stop by and lift their spirits as you do mine. www.caringbridge.org/md/matthewsackett and wwww.caringbridge.org/mo/jackshuler Thanks. Below is last nights entry, I will write more tomorrow!!
Sunday, May 18, 2003
Tonight I wanted to share a little from my heart. It seems things are so busy right now with clinic and meds that I hardly have time to think. I feel like I never get anything else done except clinic, meds, IV’s, and holding, playing and comforting Nolan. I have to say I have been blessed, not many mothers of three have the opportunity I have had over the last three months to spend every waking moment attending to my youngest son, watching him sleep, playing ball with him, watching him learn to crawl and re-learn to crawl it has been some of the greatest moments of my life. I treasure each moment with Nolan more so because his life is suppose to be so short, I feel that the Lord has given me special moments with him. I pray each day that he will be one of the ones that make it out of this. I know that we are a long way from going home and that things can change so easily, but I feel very good about how Nolan is doing. I hate it when Sam starts feeling uneasy about things, he has a sense when things are about to turn and go south. The first time he had this feeling was right before we heard the diagnosis, then again right before Nolan went into PICU the last time. So when he starts in talking about a feeling I start to worry. (he hasn’t had any feeling lately!!! Pray that he doesn’t) I try to stay positive and look for the good in all situations, sometimes it is harder to see than others. I look around me at clinic each day thankful that Nolan is progressing so well and that Hurler Syndrome has had success with transplant, there are so many that don’t know how successful their transplant may be. Just making it to 100 days is an accomplishment in it’s self. It is hard to explain and give people a real view of what life here is like. It is something like I have never experienced before, the people, the doctors, the kids, there is pain, laughter, friendships formed that will span the miles and last a lifetime, comfort, tears and more pain. I see Christ in all forms and in all places. I think the Lord is very careful about who he selects to care for these children that are so very sick and have to fight for each breath they take. I know it would be silly to say that everyone here is a Christian but I would guess that non-christians are the minority here. You only have to read some of the other websites to see the faith that can move mountains. There is a whole world here of sick children who are my heroes. They are brave little souls that live through things that would easily make me cry and want to give up, but they trudge along everyday most of the time with a big smile. I am sorry to have rambled on tonight, these are just glimpses of my heart, that I wanted to share.
Please continue to pray for Noah, he has had a rough weekend. Also remember, Jeremiah, Brent, Andrew and many other kids we have gotten to know over the last few months. Again I ask selfishly to pray for my sister-in-law and brother-in-law’s house to sell in Dallas, they are ready to move and get settled in Colorado.
I wanted to close with one of my favorite verses (Thank you Megan for using this verse in the guestbook, I love it) Isaiah 43:1-3 “Fear not, for I have redeemed you: I have summoned you by name, you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior” The Lord has most certainly been with us as we passed through the waters, rivers and fire. I can not express my joy and gratefulness I have in the Lord and the comfort he has brought to me while I have been far from home and family. I thank him daily for all the people he has placed in my path to help and give encouragement. (that means all of you who check the site daily and leave me little notes and the ones who don’t leave notes but remember us in a prayer or just the ones that check in and read) We are so thankful.
Love and Blessings,
Nancy and Nolan
Sunday, May 18, 2003 9:28 PM CDT Day T+44
WC 26.6
Tonight I wanted to share a little from my heart. It seems things are so busy right now with clinic and meds that I hardly have time to think. I feel like I never get anything else done except clinic, meds, IV’s, and holding, playing and comforting Nolan. I have to say I have been blessed, not many mothers of three have the opportunity I have had over the last three months to spend every waking moment attending to my youngest son, watching him sleep, playing ball with him, watching him learn to crawl and re-learn to crawl it has been some of the greatest moments of my life. I treasure each moment with Nolan more so because his life is suppose to be so short, I feel that the Lord has given me special moments with him. I pray each day that he will be one of the ones that make it out of this. I know that we are a long way from going home and that things can change so easily, but I feel very good about how Nolan is doing. I hate it when Sam starts feeling uneasy about things, he has a sense when things are about to turn and go south. The first time he had this feeling was right before we heard the diagnosis, then again right before Nolan went into PICU the last time. So when he starts in talking about a feeling I start to worry. (he hasn’t had any feeling lately!!! Pray that he doesn’t) I try to stay positive and look for the good in all situations, sometimes it is harder to see than others. I look around me at clinic each day thankful that Nolan is progressing so well and that Hurler Syndrome has had success with transplant, there are so many that don’t know how successful their transplant may be. Just making it to 100 days is an accomplishment in it’s self. It is hard to explain and give people a real view of what life here is like. It is something like I have never experienced before, the people, the doctors, the kids, there is pain, laughter, friendships formed that will span the miles and last a lifetime, comfort, tears and more pain. I see Christ in all forms and in all places. I think the Lord is very careful about who he selects to care for these children that are so very sick and have to fight for each breath they take. I know it would be silly to say that everyone here is a Christian but I would guess that non-christians are the minority here. You only have to read some of the other websites to see the faith that can move mountains. There is a whole world here of sick children who are my heroes. They are brave little souls that live through things that would easily make me cry and want to give up, but they trudge along everyday most of the time with a big smile. I am sorry to have rambled on tonight, these are just glimpses of my heart, that I wanted to share.
Please continue to pray for Noah, he has had a rough weekend. Also remember, Jeremiah, Brent, Andrew and many other kids we have gotten to know over the last few months. Again I ask selfishly to pray for my sister-in-law and brother-in-law’s house to sell in Dallas, they are ready to move and get settled in Colorado.
I wanted to close with one of my favorite verses (Thank you Megan for using this verse in the guestbook, I love it) Isaiah 43:1-3 “Fear not, for I have redeemed you: I have summoned you by name, you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior” The Lord has most certainly been with us as we passed through the waters, rivers and fire. I can not express my joy and gratefulness I have in the Lord and the comfort he has brought to me while I have been far from home and family. I thank him daily for all the people he has placed in my path to help and give encouragement. (that means all of you who check the site daily and leave me little notes and the ones who don’t leave notes but remember us in a prayer or just the ones that check in and read) We are so thankful.
Love and Blessings,
Nancy and Nolan
Friday, May 16, 2003 7:58 PM CDT Day T+42
WC 26.6
Yeah white cells! The cells are jumping around so much that the doctor is cutting the dose to see if we can level the swing off, it does not make Nolan feel good when the cells go from 3.5 to 26.6 in one day then back down. Nolan is still having some issues with blood pressure, but the doctor added a new medication today, so we will see how he does over the next few days. He is at least in a good mood today. After our long day yesterday at clinic we had a reasonably short day today. Caryn called us after our labs got back so we didn't have to wait in the "fish tank" room, but unfortunately when we got to clinic Nolan's blood pressure was high and rose higher still after he went to sleep in my lap while we waited to see Dr. Szabolcs. So we still had to stay three and half hours before we could leave. Maybe tomorrow things will be more settled and we will get out of there early!!! Dr. Szabolcs said if everything looks good Monday than we do not have to come on Tuesday. Yeah!!!!! Tuesday's around there are not very fun! We will only have to come in if we need something! Our regular day to see Dr. Szabolcs is Wednesday so we will always have to go clinic that day and get regular IV meds at rainbow day hospital. (by the way the fish tank room really does not have a fish tank and rainbow day hospital really has no rainbow)
Chell, thank you for the beautiful entry, I am so encouraged by you and your awesome faith, I love hearing the Lord speak through you to me. I love you and miss you and can not wait to wake up each morning and have our chi tea together, while Nolan and Chase play. See you soon in Colorado!!!!!
Hey Got Grace Girls I will be home for a week, what are we singing???? I miss singing with ya'll so much. Congratulations Elyss, I can not wait to see your new little one.
The Lord continues to bless me everyday with Nolan's smile, he is such a sweet baby, I have missed his little Nolanisms! He is starting to eat real food and hold food in his fingers and put it in his mouth!!!! I cried today when we started sucking on the bottle, it has been 9 weeks since he did that. He is coming back slowly but he is getting back to his old self and even doing new things that he has never done before, like eat a cracker and cheese and french frise and a cookie!!! My not so normal baby is doing very normal baby things!!!! I am so blessed by every moment I have with him, even though I miss Cooper and Mackenzie beyond words, I would not trade these moments with Nolan. I have always been a somewhat selfish person thinking of me first most of the time, being here has certainly changed that attitude. I hope I come out of this journey a much better mommy than when I began.
Please continue to remember to pray for Noah, Andrew and all the PBMT kids, we all have our own set of problems and heartaches that we deal with everyday. Thanks!
Love, Nancy and Nolan
Thursday, May 15, 2003 10:46 PM CDT Day T+41 (I think)
WC 3.4
Wow our counts threw us for a loop today. We left yesterday with a happy 10.5 and came in today to a 3.4 plus all the other counts went down. Nolan had been holding hemoglobin of 10.3 for about four days, today we dropped to 7.2. Needless to say we will be getting blood and platelets today. This is the longest we have had to be in clinic so far. And of course Sam left this morning so he is missing all the fun. I missed him the moment he left the car. Today is my first day doing all the pumps, meds, and clinic all by myself, we are actually doing well. Just now we wait alone at clinic and it looks like it will be a long one. Nolan has been a little grumpy the last few days, the doctors are tweeking with some of his meds, so I think that has caused sugars to be low, cyclosporine to be high and white count to drop, causing him not to be his happy little self. At least he is sleeping through most of clinic today, must be the low blood and platelets. Some one once referred to being here is like being on a roller coaster and never being able to get off, so here we ride up the hill one more time. It seems like a game to find the middle ground with all the meds, without having some other body part wack out.
Sorry we have not been updating everyday, we have just been busy adjusting to clinic and all the at home meds. We don’t seem to have much down time, so when everything is done at night we are exhausted and just want to go to sleep. Today I brought the computer to clinic so while we wait I can update. I should have thought of that earlier. We got here this morning at 10:30 and it is already 4:30 pm and we still have about 3 more hours of clinic (blood and platelets drip slowly). We should make it home by 8:00pm I hope!!!!
I am looking forward to going to Colorado for my week of vacation the first week of June. Sam will get to be here with Nolan so I can be home with the kids before they go to Grammy and Grandpa’s for the summer. What a change it will be. I don’t know if I can stand to be away from Nolan for that long, but somehow I am sure I will manage!
Well we finally made it home at 9:30 pm. Nolan had to stay longer because his blood pressure is way high today, they had to give him extra medicine and we had to wait until it came down. We are really exhausted and cranky or at least Nolan is. We finished getting our meds hooked up and oral meds at 11:00 and I am still waiting on one to finish so I can go to bed. Hopefully tomorrow will be a better day. He still seems agitated and not very happy, it took a while for him to settle enough to go to sleep.
Thank you Linda for the toy car keys and book for Nolan and the note pad and bath stuff for me, we really enjoy getting packages in the mail, it is one of our major highlights so we really appreciate it.
Thank you Kim and Hannah for the box of toys for Nolan and all the goodies for me we are so grateful to you for thinking of us, Nolan just loves the turtle and the rings (rings are one of our favorite toys we have a set in the car in the crib and on the play blanket) also thank you for the cash it sure comes in handy!!! We are so touched by peoples generosity.
Thank you Mackenzie, my sweet darling baby girl, I love my vase, it is beautiful. I will display it proudly at the apartment. You made my day. I love you and miss you so much!!! I Love and miss you too Cooper, my little man!!!!
Thanks so much for the words of encouragement, we really appreciate them, please continue to pray for Nolan to keep growing cells, and for the doctors to get the meds adjusted so he will feel better, todays set back just showed us how quickly things change around here. Please continue to pray for Noah's family and another family I have been following here at Duke, Andrew Bowman. They have been dealing with transplant stuff for over two years now, I talked with his mom Ellen today and she seems very frustrated, please pray for speedy results and fast healing for Andrew.
Love and Blessings,
Nancy and Nolie
Monday, May 12, 2003 8:40 PM CDT T + 38
WBC 20.5
Hello, this is Sam. Well Mothers Day has passed and Monday is coming to an end. Regarding Mothers Day, I still cannot get the recent entries in Noahs page by Greg and Debbie out of my head. Gregs comments about a mothers love and the poem as to how God decides to give special children to mothers continues to tug at my heart.
We will never know all the reasons that surround "Gods Will". It reminds me of a song I sing in a quartet called "First Day in Heaven". Wow, think of the questions? The magnificent thing about faith in Christ is that we do not need to understand nor agree with everything we need only have faith that God does not make any junk and he knows what he is doing. I am personally in awe of the love and perseverance that I see every day by mothers in the midst of all the pain surrounding them. I do not know how they stand the pain except in the little victories. I leap for joy at how Nolan is doing right now but I weap inside at the pain surrounding some other families. I have learned though to not ask why but too only keep praying and have faith that it all resides in much bigger hands.
I do not know exactly where I was going with all that except to say may God bless each of the mothers here. Your love for your children is incredible. In the midst of incredible suffering and pain I see you taking time to comfort others. This is none other than the love of Christ on earth. I do not know you all but I pray for each of you. May Gods hands surround you and your families and not let go.
Thats all for tonight. Regarding Nolan he is doing very good. As we said before he is 100% engrafted and his cell counts are wonderful. We of course are on pins and needles as we know how quickly this can change. We just continue to pray and take this day by day.
God Bless.
Sunday, May 11, 2003 9:31 PM CDT Happy Mother's Day!!!
Day T+37
WC 23.6
Sam and I seem to have the routine down pretty good. We made it to clinic around 9:30 am and left about 1:00pm. We had to wait for an IV med to run so we were there longer today. It really is not so bad. We wait alot for a couple of minutes of the nurses time but what else have we to do anyway! Nolan is doing beautifully. He is starting to crawl some again, I am so thankful to see that. He still gets tired very easily and sleeps a good part of the day, but he is much more himself everyday. It seems that Sam and I are much more tired out of the hospital than we were in. We both fall into bed after getting Nolan settled and fall right to sleep. I even cat nap some during the day when Nolan is napping!!
Please continue to pray for Noah's family www.caringbridge.org/hi/noah. They have touched my heart so deeply and I pray earnestly for their baby to be healed. It is sometimes hard to watch other families struggle with heartache when we are doing so well, I feel guilty sometimes because we have overcome some rather difficult moments and are on the sunny side now. I hurt for them because it could so easily by me trying to be happy for the kids that are doing well, while watching your own child suffer and slip further away. I pray for their peace. I know the Lord gave me plenty during some of the darkest times in PICU.
Thanks for all the words of encouragement and love, we appreciate everyone of them and they mean so much.
Love and Blessings,
Sam, Nancy and Nolan
Saturday, May 10, 2003 7:35 PM CDT Day T+35 (WC 32.5)
Day T+36 (WC 20.5)
Well sorry there was no update yesterday, the days just seem to run away before we know it. We are adjusting well to clinic life and life on the outside!! Nolan has 4 IV meds + TPN(cheeseburger in a bag) that we run twice a day on 5 different pumps, plus 8 oral meds taken twice a day. I feel so sorry for him, lucky for him he seems to like the oral meds. It takes us about 1hr both times to set everything up, sometimes longer. Then everything runs for about 1 1/2 hours(except TPN and that runs all night). It is actually easier than it looks, of course right now Sam is here helping me. I am sure I will have a few more complaints after Sam leaves.
Oh I almost forgot my early mothers day present, Nolan is 100% female donor cells!!!!!!!!! I can hardly say it without tears. The transplant is a sucess! Praise the Lord, He has shown himself faithful once again! We still have a lot of work, but at least we have normal cells growing in his body and none of his own left. We have been told the disorder can still progress until the cells reach the brain and they have no way of knowing exactly when that happens, but it could be anywhere from 6 months to a year. We still have no results back on the enzyme level, I think this test takes longer.
I am sorry to be so short, but we are all still adjusting to the new schedule and are very tired when we finally get evening meds finished, so please forgive us one more night. I promise to get back to novel editions soon.
Thanks for the continued prayers, We love you,
Sam, Nancy and Nolan
Thursday, May 8, 2003 9:16 PM CDT Day T + 34 (WBC 17.0)
Well we are out of the hospital and in our apartment. We did our first day of "meds at home" and it only took 2 hours. That must be some sort of a record. We are all doing great and Nolan is adjusting to his new home. I think he kind of misses the hospital.
We are very tired and since Sam is doing the update there will not be many details!!! We will type more tommorrow when we are awake!
Love Sam, Nancy and Nolie
Wednesday, May 7, 2003 6:12 PM CDT Day 33
WC 11.9
Happy Birthday Nana!!!!
We are just about ready to go. Our last night! Wow I thought the day would never come. When you first get here, going home seems so far away. You pray you have no complications so you can get out on schedule. Well we are getting out on schedule and we had complications, so it can be done. Nolan is doing great. I feel like we have gotten a get out of jail free card. There are so many kids that have been here longer and some that will be here a lot longer. I feel blessed that our complications could be dealt with quickly. Brent our next door cellmate has been here since January, already reaching their 100 day point and they are still in patient. Please lift them up that things will speed up and Brent will go home to the apartment soon. www.caringbridge.org/ga/brent They are also neighbors at the apartment too. Noah has also been here since February as always please remember them as they continue the struggle. www.caringbridge.org/hi/noah
I think some people have the impression when I say going home that we are going home to Colorado, I only wish. We are going home to the apartment here in Durham, it will still be at least mid July before we can go home, home back to Erie.
Sam will be here in about two hours. I am excited about getting out, but dread clinic. Peggy, Jeremiah’s mom came by today while they were waiting at clinic and she said it is horrible, all the waiting. It is only her second day of it so I am sure things will calm down soon. (www.caringbridge.org/ia/jeremiah I hope!!! I feel pretty comfortable drawing blood, changing caps on the central line, changing the dressing, hanging the meds, drawing up the po’s , etc, I have been practicing every chance I get. I hope I can remember what meds run at what times, we have a road map but I am still not sure how well I will follow.
We are just relaxing tonight and enjoying having one more night of the nurses doing all the work for us. The real work begins tomorrow!!!! Pray for us as we start the clinic phase. Pray that Nolan keeps progressing as well as he is now and that we avoid any virus or infections.
Love and Blessing, Nancy and Nolan
Tuesday, May 6, 2003 9:59 PM CDT Day T+32
WC 15.7
We are still going on the premise of no news is good news! Nolan seems to be doing so well it is almost too good to be true. Everything is lining up for our discharge on Thursday; I have been learning pumps and such and feel pretty good about it all. As I have said before I think I will get my RN after this is over. We went on another pass today to the apartment, Nolan is getting better he only cried when we was awake! Where ever I sat him, he did not enjoy, so he either slept or I held him the whole time we were at the apartment. Maybe tomorrow he will let me put him in the pack and play.
Sam will be arriving tomorrow night. I am so excited. He will be here for a week to get us settled. I have counted and if we go home at 100 days, we only have 9 more weeks to go!!!! We have already been here 11 weeks, so 9 more will be a piece of cake!
My bible study lesson for week is experiencing the peace of Jesus. Wow, some how he always knows what I need to be reading about. Again the Lord has used Isaiah to give me peace; I think I will know that whole book by the time we leave here! “You, Lord, give true peace to those who depend on you, because they trust you” Isaiah 26:3 I have been given so much peace and grace since we began this journey, sometimes I can not believe it is really me here doing the things I have done and witnessing the miracles of God. My son is truly a miracle. The Lord has shown himself more than once during the last 11 weeks. Nolan has made remarkable come backs leaving the doctors holding their tongues, proving them wrong on several occasions. The only explanation is the Lord God Almighty!!!!! I have felt his presence with me on a daily basis giving me just enough strength I need for that day. I know we have a long road still ahead of us, but I know my Lord will be with us every step of the way.
Please continue to pray for Nolan and our family as well as the other families here on the unit and out patient.
Love and Blessings
Nancy and Nolan
Monday, May 5, 2003 7:54 PM CDT Day T+31
WC 11
ANC 9000
Nolan just keeps on doing better and better. We could not be more please with his counts, for that matter all his blood work looks really good. We have not had to have platelets in two days, this is great considering we were getting them everyday sometimes twice a day. I am so thrilled that we are headed home on Thursday. Today we had a four hour pass, of course we did not actually leave the building for four hours, Jeremiah was being released today so we stayed around for the confetti party. It is always fun to watch someone leave the unit. We were practicing for Thursday, when we will have our own confetti party. Congratulations Jeremiah!!!!
Nolan did not really like leaving the hospital again. He cried almost the whole time we were out. Maybe tomorrow he will do better. He was overjoyed when we returned to his room on the unit and he saw his crib and toys. Tomorrow we will take some of the toys that stay in his crib all the time, familiarity is good.
Well things have greatly settled down here and I for one am grateful. As the old saying goes no news is good news. So we have no real news.
Please continue to pray for Noah www.caringbridge.org/hi/noah they are waiting, and they seem tired and overwhelmed. Please stop by their site and share some encouragement.
Love, and Blessings, Nancy and Nolan
Sunday, May 4, 2003 9:30 PM CDT Day T+30
WC 11.6 !!!!!!!
Wow! Today has been a great day. Praises are in order, Nolan started off our day with a white cell count of 11.6. We almost doubled since yesterday. We are doing so well that there is talk of going home to the apartment on Thursday!!! We started the major weaning process today and changing most of our meds to oral. Nolan is actually getting used to talking things by mouth and even took 37 cc’s of pedisure from a syringe. We tried to get him to drink from the bottle but he still does not seem to like it. He is taking his pacifier now. We have several things he still has to come off of and wean down over the next couple of days but things look good for Thursday. Sam will be coming back on Wednesday to help us move to the apartment and get settled into clinic. We have decided to switch our primary doctor from Dr. Kurtzburg to Dr. Szabolcs, we have much confidence in Dr. Szabolcs he has seen Nolan since we have been in the hospital and he was with us each time Nolan has been to PICU, plus clinic day will be a lot less stressful with him. Dr. K’s clinic days are famous for being long. We feel very comfortable with the decision and know Nolan’s care will be the very best. We are so very proud of the great strides Nolan has made. One week ago we were still on a vent in PICU, now we are ready to leave the hospital!!! Please continue to pray that Nolan continues on this path, if all goes well from here on out Dr. Szabolcs said we will make the goal of leaving at 100 days. Hallelujah! I know so much can change so quickly look how fast we went from bad to good, it could just as easily go the other way. We are trying not to focus on that and focus on all the good things going on in Nolan right now. The Lord is working a miracle. Tomorrow we have our “fish” test to determine donor cells and also to determine how much enzymes are in his system. Pray for good results, we will have them back on Thursday (a lot quicker than originally thought). I feel confident that we will have some good news, but I will sit on pins and needles until we know for sure!!!
We took Nolan out today for a pass. He and I drove Sam and the kids to the airport. I think he really liked riding in the car; he did not like wearing the mask. It will take sometime getting him used to the idea of wearing it. I think we will try it again tomorrow. He got a little fussy so we came back a little early. Tomorrow I think we will try going to the apartment for a couple of hours. I loved having the kids here and miss them already. They should be landing in Denver shortly. I am glad Sam will be back so soon and we will all get to be together. I look forward and dread being at the apartment, there are many things I will love, like showering when I please, eating what I want and when, sleeping through the night with no beeps, no one walking in my room at night but there will be things I miss about being here on the unit, closeness with other parents, nurses to chat with and ask silly questions to and there is always someone to talk to at all hours of the night and just the security of having all the right people with in ear shot if some emergency should arise. It was kind of scary today taking Nolan away from all the people that could help him in a flash. I know we have to leave and that there is always the possibility that something could go wrong, I think PICU is still too fresh in my mind. Nolan is doing great and I am just worrying. Airway will always be one of my top worries. I placed Nolan in the Lords hands the moment we arrived here and will leave him there as we make the transition to the apartment. I pray the next months of clinic to fly so we can go home in July and be with our family.
Any mail should be directed to the apartment address: 300-102 Glengary Ct., Durham, NC 27707
Love and Blessings, Nancy and Nolan
Saturday, May 3, 2003 10:12 PM CDT Day T+29
WC 6.3
Nolan is looking better and better everyday. His counts are jumping higher and higher, we are so excited. Nolan just loves having his Daddy and Cooper and Boo Bear here. He is acting more and more like the little Nolie we all love so much. Smiles are coming without much work on our part. It is so nice to see after all the stuff he has been through the last four weeks. The doctors are saying we might make the jail break the week after next. We are being given a two hour pass for tomorrow, this means we can take Nolan off the unit and downstairs for a little while, he won’t even have to have all his IV’s hooked up. Our first outing, how exciting. We feel so blessed to be progressing so well.
Sam and the kids attended the Rainbow of Heroes walk today. They met many families who had transplants in prior years. There was a wall of heroes, with pictures of all the kids that are on the unit now and ones who have already completed transplant and ones who lost the fight. I did not get to see the wall itself Sam took pictures for me but , one of the other moms from the unit told me it brought tears to her eyes when she started looking at all the kids up on the wall. What a humbling sight it must have been. This Wall of Heroes, our little fighters, who suffer through so much pain, procedures I am sure most adults would cry through, swallow countless syringes of yucky medicine, lose what little strength they have yet they keep on going fighting with more stamina than most adults. Thank you all who participated in this years walk by donating money in honor of Nolan. We are so grateful. Sam was able to turn in a total of $500 in Nolan’s name. Thank you so much.
After the walk, we had Nolan’s birthday party. Because Nolan was so sick on his birthday we saved all the presents until today. He loved opening them and played mostly with the paper (typical baby) we have some great shots. Hopefully I will have some new pictures on the website tomorrow, if I can get them downloaded. Nolan seemed to enjoy the festivities and having the kids around to help open everything!!! Thank you Marge for the bobble head Mickey and blanket, Thank you Alex, Andrea, Todd and Nick for the big ball thing, Thank you Jennifer for the stacking rings (this he actually opened on the real birthday), Thank you Tommy Bennett for the Easter Basket full of goodies (we saved all the Easter stuff until today too), Thank you Nana for the books, bibs and outfit (he liked the bows the best). His first birthday was certainly not the way we would have planned but under the circumstance it went pretty well. You need to see the pictures of Daddy wearing the party hat. Speaking of the party hat Nolan actually wore the thing until he popped himself with the elastic strap. It was really very funny and Sam and I had a good chuckle until we realized he had popped himself very hard and it left a mark on his head, then it didn’t seem quite as funny.
I have enjoyed having the kids here, but it always seems too short. They will return home tomorrow night. It will be another 3 to 4 weeks before I see them again. I know I have been out of the loop too long when Kenzie tells me Daddy says I can and Daddy says to do it this way. I miss being a mommy! I pray that this time will be short in their memories and that it will leave no lasting effects. They are excited about the upcoming summer at Grammy and Grandpa’s, Sam and I plan for them to come out at least one more time during the summer for a couple of weeks. It will be easier when Nolan is at the apartment and we only have to go to clinic a few times a week.
Please continue to pray for Noah, the first reports of the booster cells are not very good, they are waiting for more test in a couple of weeks. Noah has been doing somewhat better this week. www.caringbridge.org/hi/noah . Our friend Alex was discharged today to go back to her apartment. Way to go Alex!!! Jeremiah will be leaving on Monday, Yeah Jeremiah!!!! All the kids we transplanted with are breaking out; we plan to be not far behind.
Love and Blessing, The Ramsey’s
Sam, Nancy, Cooper, Mackenzie and Nolan (together again)
Friday, May 2, 2003 10:21 PM CDT Day T+28
WC 4.9
Nolan has had a fabulous day. We slept. Nolan slept pretty much all night, he woke up around 4 am and played with Sameeya for a while then went back to sleep until 6:30. At 8:00 am he got more adivan and it was back to sleep until 11:00 am!!!!! Mommy slept through most of this. I was only awake for the 6:30 to 8:00 stint. We both feel refreshed and ready to go. He was much more like his old self today smiling and playing in the crib. The rashes seem to be gone! I think he looks 100 % better. Our cell count just keeps climbing!! What a great feeling, just one week ago he was still on the vent and looked like the Stay Puff Marshmallow man. He is back to his check in weight of 11.5 kg.
Sam and the kids arrived tonight, Nolan was so happy to see them and I think they were just as happy to see him. He smiled his wonderful smile for them as soon as he woke up. They are excited about the walk tomorrow; there are lots of fun things going on in addition to the walk. I will be at the hospital during the walk and then Sam and I will trade. I think Sam enjoys his time with Nolan. He was really impressed about how well Nolan looks compared the last time he saw him. I am in high hopes that we will be out of the hospital soon. I know that there are lots of things that could happen but for now the titter totter has swung the other way!!! Everyday we move a little closer the having Nolan back from this horrible disorder. I pray that he will be healed completely. We will have our test on Monday that will tell us how much donor cells are in his system. We pray for 100%. We will have to wait 5 days or so to get the results. I have learned that you wait for everything here.
I have said it before, this place is a place of hope, and all of us here are hoping that our child will live. Knowing that without Duke Pediatric Bone Marrow Team we would have no hope. It was pure God-cidence that my family was led here and whatever the future holds for us here it is for a purpose. The Lord has plans for Nolan and our family. We are strong because we place our faith in the Lord. I hope we show how much we depend on the Lord during the darkest times, not only praising when things are good but when all seems lost. I feel I still have much to learn from the test that has been set before us, I pray for the guidance and strength to approach each day with a positive attitude and look for the good in all situations. I learned very quickly that my situation is not so bad when you look down the hall at all the other families dealing with equally devastating diseases there is always someone in worse shape than you. Please continue to pray for all the kids on the unit, this week was a very hard week here loosing two kids within a couple of days.
Love, The Ramsey’s (together again)
Sam, Nancy, Cooper , Mackenzie and Nolan
Thursday, May 1, 2003 8:27 PM CDT Day T+27
WC 3.7
Nolan is slowly coming down from all the sedatives (narcotics). He still is not sleeping, only when he is given adivan? (a drug that calms him) this afternoon is the longest he has slept in two days. He slept from 4:00pm to 7:00 pm Yeah!!!! Now if he will only sleep when it is time for bed!! Mommy has had very little sleep also and I have a harder time sleeping during the day when he finally goes to sleep. Maybe tonight is the night that he will sleep all night. His rash looks much better today and other than sleep deprivation Nolan looks pretty good. He still sounds really raspy and the docs would like this to be better before we consider going to the apartment, but Dr. Szabolcs did mention maybe the end of next week!!!!! Of course he won’t be the attending doc next week and we will have to take that up with Dr. Driscoll, so you never know. His smiles have come back slowly but today most everyone who came in the room was graced with a Nolie smile. I am so glad to see them. I feel like he is really back!
Well this weekend should be busy for the kids, the Rainbow of Heroes Walk is Saturday, Sam has been collecting money to benefit the Family Support Group for the PBMTU, they do many things for us here on the unit that make life a little easier in the most difficult times. Thanks Sammy for taking up the cause, I love you for being such an active Dad, always willing to do your share in Nolan’s care. I know you miss being here as much as we miss you being here. Can’t wait until summer when you can be here more often!!! I am so blessed to have you!!!
I have a few more “thank you”s to mention, I always seem to forget so if you don’t get and card or I don’t mention it on the website, please forgive me, my mind just forgets sometimes, I have a hard time remembering anything longer than five minutes. We really do appreciate every thing we receive.
Thank you the Lovell’s for the framed print, notepad and Gina for the Book, it has been a blessing. (Sorry so long to thank)
Thank you Jennifer for the Thomas the Train DVD, Nolan loves holding it, I am sure he will love watching it too, if I can ever figure out the DVD in the room. You are the bestest best buddy!!! We love you.
Thank you Jeremiah for the pillow case, Nolan loves the animals on it.
Leasha for the book, I can not wait to read it in my “spare” time, I am so thankful the Lord put you in my life seven years ago!!!
To the Lamberts for the ticket for the kids to fly out here this weekend. Thank you Thank you!!!!! I am so grateful.
Thank you First Baptist Church Durham – Marge Markley and Tim Markley for checking in on us regularly. We are so blessed to have a church family here.
And always thank you all who sign our guestbook with words of love and encouragement and those who don't sign we know you are out there!!! We could not make it without all of you supporting us and cheering us on!!
Love & Blessings, Nancy and Nolie
Wednesday, April 30, 2003 9:22 PM CDT Day T+26
WC 3.8
Nolan just keeps growing those cells! What a great thing to happen after all the little hurdles. We had a very sleepless night. Nolan and I only slept a total of an hour last night and not much more during the day. He finally slept a couple of hours late this afternoon, we got the oxygen tent back to help him feel comfortable. No he is not needing it to breath we just thought it might make him feel secure to sleep and help break up some of the gunk in his chest. He likes the tent. I think the sedatives are finally getting out of his system, earlier today he was crabby, sleepless and shaking. Now he seems more calm, we will see tonight when we head off to sleep. I plan for that to be very soon or Mommy will be crabby, sleepless and shaking. For the most part things have settled down a bit and we are adapting back to unit life. We like our new room, it is very close to the parent room where the bathroom is and where we eat. Nolan will be getting a new drug to help fight the graft vs. host disease, he is still having a rash and the docs want to head it off before it goes too far. I heard the possibility of 10 days tonight before we could maybe go to the apartment, nothing is ever a sure deal here. So we will wait and see. Plus Nolan has to be taking most meds by mouth and we are still a ways from that. He takes a couple of things now but with a lot of fight and sometimes it comes right back up.
Sam and the kids will be here Friday, I can hardly wait. I miss them all so much. I sometimes envy the other families who both parents are here. It would be nice to have Sam here all the time to help carry the load. But our situation is different and we have two other kids to consider what is best for them.
Please continue to pray for Noah, he is improving some this week - Yeah Noah!!!! Keep up the good work and keep Pooping! Pray for Alex Martini,she still has not been able to return to her apartment yet. Today is Alex’s Mommy’s birthday, stop by their site and wish her happy birthday. It is no fun having to spend the day in the hospital. Also pray for Jeremiah,another cellmate that has been having some problems before going home to the apartment. Keep praying that our Nolan continues to grow cells and that the graft vs. host will improve with the new med.
That’s all for tonight.
Love, Nancy and Nolie
Tuesday, April 29, 2003 Day T+25
WC 2.6
ANC 1800
WE ARE BACK!!!!!
Again this will be short. Another busy day for Nolan. Nolan was awake more today but also more agitated. I think he is having withdrawal from all the pain meds he has been on. They are trying to wean him a little. We did not get into a new room on the unit until 3:00 pm so we were very busy after that getting all our meds ran and a bath. They did not run any meds in PICU today; I think they thought we would be out of there early this morning. Nolan had another reaction this evening around 8:00 pm, this time he was not on Pentobarbital so they think now it might be his TPN (Cheeseburger in a bag as I like to say) causing the rash and high heart rate. They will reformulate the TPN and start a new one tomorrow. Anyway it is late about 12:15 am and Nolan has finally gone to sleep just a minute ago. I hope he rest for a while. It is nice to be back on the unit, even though I can not come and go as I please like I could while we were in PICU, I still prefer the unit. One of our favorite nurses from PICU, Elizabeth came by this evening to say hello. It’s nice to see them outside of PICU. Thanks for coming by Elizabeth!!!! I also wanted to thank our other nurses while in PICU: Tiffany, Penny, Christi, Jenny, the other Jenny, Greta, Ora, and some of the others I can’t remember all the names Thanks so much for making our third trip to PICU more bearable. Well I am going to go to sleep myself now that Nolan is asleep. I will update more tomorrow.
Please pray for the Travis Williams Family, Travis past away this morning in PICU. This is the second bone marrow kid to pass in the last three days. Please remember all the families here and in PICU it is very hard on all the families when one of the PBMTU family passes away. Thanks for all the prayers for Nolan, we are so grateful to be back and that we are recovering so well.
Love, Nancy and Nolie
Monday, April 28, 2003 10:39 PM CDT Day T+24
WC 1.7
ANC 1300
This will be short tonight. Nolan is off the ventilator and doing very well. He has been sleeping mostly and seems to not be in much pain. We are thankful for that. I have gone to the apartment to sleep alittle while he is sleeping. Tomorrow morning we should be moving to 5213. The new number will be 919-681-5213. I will have a longer update tomorrow. Thanks for all the prayers for Nolan's cell count and for him to come off the vent so well.
Love and Blessings, Nancy and Nolie
Sunday, April 27, 2003 11:06 PM CDT Day T+23
WC 1.3
ANC 605 Yeah!!!!!
Grow Cells Grow!!!! The cells seem to be growing like weeds. Each white count they run seems to have an increase in cells. I cried this morning when Dr. Driscoll told me the counts. It is nice to get good news in PICU. They are once again considering removing the tube in the morning, they will re-evaluate in the morning and if all goes well, will remove the tube. I was told not to get to excited, because this might not happen tomorrow, but things look really good right now. Nolan has been resting comfortably today after trying to take the tube out himself, they upped his sedation yet again and now I think without the vent he would not be breathing, (ha ha) sometimes you just have to find the humor. I told Dr. Driscoll this morning I think we will just go home from here; he laughed and said he didn’t think anyone had done that yet! There is always a first time. Nolan has made great progress, I know we still have a few things ahead but I feel much better with this hurdle behind us. I thank each one of you who lift Nolan up in prayer on a daily basis, we have been so blessed. I can never express my gratitude. Please continue to pray for him that each day will be better than the one before.
I do not know how one would get through this whole journey without the Lord; he has given comfort, wisdom, money, strength, and new friends to share the load with. I feel we have all been changed by just being here. I hope by me writing so publicly about our struggles and heartache that someone might see where the source of strength comes from, because it is not from me, that’s for sure. Only by Gods grace! When I seem to think I can not move forward one more inch, the Lord sends me a renewed spirit, it comes in all forms, nurses, doctors, a stranger in the cafeteria or someone else hurting as much as me that gives me encouragement. Thank you Lord for the many lessons you have brought my way.
“But those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint” Isaiah 40:31
Continue to pray for Noah’s family www.caringbridge.org/hi/noah . Pray for our cell count to go up, up, up! Pray for the air leak to continue and we get out of here soon. Praise that I have gotten good sleep the last couple of nights. Pray for Alex to get back to her old self and be re-released from the unit. Pray for the Ryan Davis Family, Ryan lost his battle this afternoon. We all covet your prayers and are so grateful.
Love and Blessings, Nancy and Nolie
Saturday, April 26, 2003 11:23 PM CDT Day T+22
WC 1.0!!!!!!!!!!
Nolan had a good day. He is still very hard to keep sedated, but we did not have any out of the ordinary incidents. We started the day with a white count of 0.7, this made us very happy. We have not gotten our ANC yet, I kept asking all day. They plan to run the differential at 4am. One of the Nurses on the unit said she would look up the labs at 4:00 am and calculate our ANC then call me with the results. We need an ANC of 500 for three days in a row to be considered fully engrafted. We also can not go home to the apartment before this occurs. The last white count taken this evening was at 1.0, Nolan is really growing those cells now. I can hardly wait until tomorrow. He still does not have much of an air leak so we are still waiting. We plan to be the first patient to go directly home from PICU. Nolan looks great except for that tube down his throat. We are told they really want to wait to take the tube to avoid any damage to the airway. So we will probably be in PICU until Tuesday or Wednesday. I felt so sorry for him today, when we rolled him to his side we discovered some blister like sores on the back of his head, it almost made me cry to think how that must hurt him. The nurse put a patch thing on the sores and let him sleep on his side for awhile, I think he really enjoyed this.
Sorry to be so short tonight, I came home early to get some sleep. Nolan was doing so well this evening that I thought I would take advantage and sleep too. Thanks for every ones sweet entries on the guestbook, they make my day.
Love, Nancy and Nolie
Friday, April 25, 2003 11:59 PM CDT Day T+21
WC 0.6 Go baby go!!!!!
Nolan has had a somewhat repeat of last nights episode. When I arrived back to the hospital at 8:00 pm all the doctors were once again in Nolan’s room assessing him. After he received his dose of pentobarbital (a sedative) He dropped his pressure and his heart rate went high and a rash appeared all over his body like hives, he swelled up again. If he keeps this up we will never get that tube out! They are waiting for his airway to create an air leak with swelling there is no leak. I have become very jumpy about his oxygen stats, tonight when we were suctioning him he dropped his stats in the 50’s of course we turned on 100% oxygen and he recovered in seconds, but my heart fell to my stomach and tears rushed to my eyes. Liz our nurse apologized because I got so upset. Sometimes if they don’t turn up the oxygen when they suction this will happen but they recover very quickly, because Nolan was really just holding his breath for a second. I have become very sensitive since yesterday and have a harder time holding myself together. I miss Sam he does so much better with all of this. Anyway, he is fine now and they are upping his sedation so he will rest better. It seems like everyday we are upping something!
Nana is leaving in the morning, I think she is sad about leaving before Nolan is out of PICU. She wanted to hold him before she left, but now he will be on the vent until Sunday or Monday. We will miss Nana after she leaves, Nolan and I will be here alone until Wednesday when Holly is coming. She will be here until Saturday evening. Sam and the kids are coming in on Friday, so we will have lots of company until Sunday. They are coming to participate in the Rainbow of Heroes walk on Saturday May 3rd. If anyone is interested in sponsoring Sam and the kids( they are walking in honor of Nolan) just send donations to www.giftrecords.duke.edu make sure you mark “Cancer Center” and under comments write “Rainbow of Heroes Walk and Samuel Nolan Ramsey or Send a check payable to “Duke PBMT – 03RH” and Mail to Duke PBMT -03RH, DUMC 3350, Durham, NC 27710. The walk is to benefit the Duke PBMT Family support Program (this program provides best buddy’s, CellMates, Salon Day, pagers, phone cards, community meals, etc.)
Nolan’s white count reached 0.6 today and stayed there all day. I hope this means that we are on the upward trend!! We hope tomorrow he hits 0.7. The better the cell count is the better he should come off the vent. We are just waiting now to make it as easy as possible for Nolan to have the tube taken out. They do not want to cause more swelling and make the airway close again. Then we would be back to square one. Pray for the air leak!!
Peggy, one of the other moms on the unit has gotten an apartment in my complex. It will be nice when we are out, we will be able to help each other with labs and errands. Her son had his transplant the day before Nolan. They will probably make it to the apartment stage before us, but we hope to be not far behind.
I miss being on the unit. I do not feel apart of things over there at all. I would think this is the time that I would need them the most with Nolan being in PICU, but not being there day in and day out makes a huge difference. Emotionally it is hard to even go over to check on all our friends, I feel we don’t belong there. Ironically, over at PICU I do feel apart of the unit. I think we have gotten to know many of the doctors, nurses and therapist after our third trip to PICU. Not that I enjoy being in PICU but I feel more comfortable there than I have in the past. Our nurses have been great.
Well I think that is enough rambling for this evening.
Continue to pray for Noah and his family, I haven’t seen them in a couple of days but know they need your prayers. Pray for Nolan’s counts to continue going up. Pray for me to be strong and deal with all the pressures and stresses of this life here. Pray for our friend Alex, she had a severe reaction to one of the medications and is back on the unit.
Blessings and Love, Nancy, Nolie and Nana
P.S. I just read all the guestbook entries from today, Thank you all, it was just what I needed to hear. The Lord provides comfort in each and everyone of your words. Thanks!
Thursday, April 24, 2003 Day T+20
WC 0.5
Tonight is the first night Nolan has spent in the hospital without Sam or I there all night. It is 1:16 am and I just got back from the hospital. I plan to return around 6:00 am. I do not think I can sleep, I feel like such a bad mom for not staying somewhere up at the hospital. I worry about not getting back in time in case something should happen. As you can probably tell, we were told to leave our room today. I thought it would be no big deal, until they asked me how fast could I get out. It really hit me kind of hard, like the last weight I could bare. It really wasn’t even about the room, it was more the symbol of the room and now not having one. I have been so good not to get upset about everything that is going on, solely leaning on the Lord. But today I just felt every ounce of pressure and stress that has been mounting for the last several days. You know I have said it before the big scary things I seem to handle pretty well, it’s these little minor silly things that bring the tears. Of course after the tears start it is really hard to stop them. Nolan has been pretty stable today except for this evening he had a period when his pressure dropped (60/?) and heart rate went high (180) he also developed a rash, I think he just likes to get everyone stirred up. He was stable when I left only his oxygen was a little low, but that seems to be Nolan. The doctors decided today after a consult with ENT that Nolan should remain on the ventilator for several more days, we probably won’t leave PICU before Monday. They seem to be in no hurry. I am in no real hurry either we would hate to have a repeat of Saturday. I just hate not being able to stay with him or at least close by in case of an emergency, and while we are in PICU we have no room. Please pray for peace in my heart that Nolan is being well cared for and that I can rest while he is still in PICU, I find it very hard to sleep at the apartment now with no one that really loves my baby at the hospital. I will probably end up sleeping on the chair in the PICU waiting room from now on, I just can’t stand not being there.
It is very late and I do need to try to lay down for a few minutes before I return to PICU so I will update more tomorrow.
Love, Nancy , Nolie and Nana
Wednesday, April 23, 2003 10:50 PM CDT Day T+19
WC 0.4
Yeah Nolan, Grow Cells Grow!!!!!!
Today was a restful day in PICU, Nolan is on the lowest settings on the vent and doing very well. He is being moved to an isolation room tonight so that when he comes off the vent he won’t be exposed to other kids. His sedation has been cut and he seems to be tolerating it very well. I pray that tomorrow he will not be agitated too much when the tube is taken out. The doctors think he will only have to remain in PICU for a couple of hours after the tube is out, then we can go back to our home on 5200. I am so thankful. I pray that we do not have anymore airway issues to come up. I also hope we avoid PICU from now on. Nolan’s cell count this morning was 0.3, in PICU they do cell count every eight hours so the latest count is 0.4. Maybe this will be the start of the upward climb.
I have been really feeling tired this week, I think all the events of the last few days have caught up with me. Wonder why? Sometimes I look back over the last six months and think wow, look at all that Nolan has been through already, and there is still more to come. Hopefully when Nolan gets back on the unit I will get more rest and be able to concentrate better until then sorry about the short update.
I will again close with some more Thanks!
Thank you Sameeya for the bunny ears and blue bunny can’t wait for Nolan to see them.
Thanks to June and all the Walega’s for the books, candy and especially the Nerds!! Also for the Survivor pin it’s great.
Thank you again April for the money it always comes when I need a little extra!! God Bless you.
Love and Blessings,
Nancy, Nolie and Nana
Tuesday, April 22, 2003 11:25 PM CDT Day T+18
WC 0.3 – 0.2
Nolan’s white count dipped a little today, we started out at 0.3 this morning and ended this evening with 0.2. I am told that we will bounce around like that for a while. I am praying for tomorrow’s count to be 0.4. Nolan is almost ready to wean off the vent. The PICU doctors would like to take the tube out tomorrow. Dr. Szabolcs would like to leave him there for a day or two more to be sure that the mucositis is gone. Sam and I agree with Dr. Szabolcs, we do not want to rush to process and end up in PICU again. We will see who wins out in this discussion. Nolan has been waking up some today and he even had physical therapy. He played with the balls and put them in a box. He is still heavily sedated and they will cut the dose in half in the morning. I still think he will need to go to The Betty Ford Clinic when we get out of PICU. It looks like we may get to stay in our room because Nolan will be returning sometime this week. Thank you for all the prayers, it’s working.
Our friend Alex went home today. We are happy for her but will miss her and her mommy. Andrea had adopted me and I will miss being so well taken care of. They were so good to check on me daily and bring me food. I will also miss girl movie nights and our late night talks. I hope things are going well for them on their first night out. Thanks for the call tonight.
Reese’s parents Shawn and Doug came to see us today. It was so good to see them. I know it must have been really hard to come here and see everyone. They did great; the Lord must have been holding their hands as they walked theses halls that hold so many memories of Reese. I was praying for them the whole time they were here. I hope it was a good visit for them and that it helped in some way to be here again. I hope to see them again soon when Nolan is back in our room on 5200. Thanks guys for coming it meant a lot to me.
I am really tired tonight, (one too many late night talks) and would like to go see Nolan one more time before bed so I will wrap up with a few “thank you”s .
Thank you Alicia and Tommy Bennett for the Easter basket with goodies Nolan will be enjoying them soon.
Thank you to the Church that sent a package to Nolan.
Thanks Barbara Correll for the great meal and flowers you brought to the apartment.
The Donovants thank you for the card and money and for keeping up with us on the website.
Thank you Jennifer M. (best buddy) for the stacking rings, Nolan will love them when he gets back.
To Grammy and Grandpa for the Balloons
Sameeya for the birthday balloon and for taking care Nolan in PICU
Tiffaney thanks for taking such good of Nolan in PICU and all the other nurses we have had while in PICU.
Thanks to all the PBMT nurses for faithfully asking about Nolan and genuinely caring about him.
To Marge Markly for the birthday gift.
To Alex Martini for the birthday gift.
Well I am sure I left some off but that is all I can remember for now. Thanks again to everyone who checks in daily on us through the website. We appreciate each and everyone of you.
Love, Nancy, Nolie and Nana
Monday , April 21, 2003 Day T+17
WC.02 !!!!!
Thank you all for praying for Nolan and our family, we sure have needed them and we can tell that we are covered in Prayer. Nolan is such a little fighter. He is doing so well. Today they did a scope of his lungs and found no bleeding. This was great news; because of this they now have moved him to the ventilator. He is doing very well with the transition, only requiring 25% oxygen. He seems to be resting better and looks more peaceful on the vent. We still have a ways to go but things certainly look better. Nolan is still very puffy and needs additional meds to help with this. But they are finally getting his levels all adjusted. The doctors are still saying that we will be in PICU for about two weeks. My bad news was that we may have to give up our room on the unit until he is ready to come back from PICU. The doctors said they would try to leave us here but they may need the room to get someone else started, but that when we were ready to come back we would have a room! This would be kind of a pain, because of all the stuff we have accumulated over the last four weeks and I would not have a place to sleep except the waiting room of PICU. We will wait and see. Pray that it works out for us to keep Nolan’s room on the unit.
I just checked in on Nolan before I came back to go to bed and his white cell count is now 0.3. Way to go little guy!! Keep building those cells, The faster we build up our cells the faster the mucusitis will go away.
That’s all for now, it is very late and I will update more tomorrow.
Love, Nancy, Nolie and Nana
Sunday, April 20, 2003 5:07 PM CDT Day T+16
WC 0.1
Well now for the novel edition as Sam puts it of the last couple of days. Yesterday Nolan was breathing so hard that the doctors wanted to try to give him some relief, our two options were the Ventilator or the Bipap machine, and of course we chose the Bipap because that can be handled on the unit and not in PICU. Once we got him on the Bipap his stats started to drop and he coded again. (Mommy did well and did not run down the hall screaming for a doctor this time, I remained calm and stayed in the room but out of the way only shaking a little) This time he was not without oxygen at all, respiratory was already in the room, he did have quite a bit of bleeding, which the doctors believe came from his stomach, he only aspirated a little blood into the lungs. He was taken to PICU and placed on the oscillator. The doctors feel like he will be here for a couple of weeks, to make sure he is over the mucusitis. ENT will scope him tomorrow to see if it can be determined where the bleeding occurred.
Today the doctors are a little concerned about an infection. Nolan’s stats keep jumping around and something is munching up the platelets. He went from 150,000 platelets after he went to PICU to 40,000 today. His white counts have also dropped back to 0.1; the doctors said this can jump around for a few weeks and not to get too excited about it. We pray that this is not an indication of infection, but are prepared to fight it. They have already started the antibiotic to treat the infection. On the unit infection is the kiss of death. We pray this has been caught early and Nolan has it in him to fight it off. He is a strong little man and has a whole army of people praying for him. We have strong faith that Nolan will be back on the unit very soon. We try to keep a positive attitude and smile. The Lord is watching out for Nolan now it is not in our control. We just stand by and rub his head or hand telling him we love him and that Jesus is here with him. He tries to wake up whenever we are in the room, so they have to keep sedating him. Sam likes it when he tries to wake up saying he is a fighter.
I dropped Sam at the airport a few minutes ago; it always makes me sad to see him go. I know he has to go home and be mom and dad to Cooper and Kenzie but I miss him already. He was kind of hesitant to go with Nolan so sick, but we have two other kids who need their daddy. Needless to say the hurdles seem to keep getting bigger and bigger. My peace has been a blessing; the Lord has been preparing me for these hard days. I know whatever happens my Lord will sustain me and life will go on. Life here is different from life out there, but people still laugh and make jokes, we have laundry to do, messes to clean up, food to eat, and friends to share with. You have to keep things light sometimes because there is way too much to be depressed about if you let it. Sam and I decided before we came here that we were going to remain positive and thankful for each day and always find the good in every situation.
We would like to ask for urgent prayers for our sweet little boy, pray specifically for there to be no infections, for his white counts to start coming in strong, for there to be no more bleeding, and for the mucusitis to go away. Also pray for me to remain strong and positive, to be aggressive and asked the questions that Sam would ask and for me to get good rest while Nolan is in PICU. Pray for Nana to have a peace about the whole situation and trust the Lord that he is taking care of Nolan. Pray for Sam as he goes home that he will have peace about not having to be here while Nolan remains in PICU. Pray for the doctors and nurses caring for Nolan that they will have the knowledge and wisdom to know what the next steps should be. We have been so blessed to have such wonderful caring doctors and nurses, we could not ask for better care. Please remember Noah’s family as they continue to fight for his life. Pray for all the kids and families here on the unit and PICU, it really is a different world.
Thank you for checking in on us. We really appreciate all the support. Well I will conclude the novel for now, hope this gives all the details Sam left off.
Love, Nancy, Nolie and Nana
Saturday, April 19, 2003 12:53 AM CDT Day T + 15
The day could be wrong but you know me. Not too good with these "T +" numbers!
Good news and not so good news!
The good news is Nolans WBC is 0.3 today and he is very pink, rashy, fever, etc. All good signs of new cell growth coming on strong!
The not so good news is he lost his struggle to stay on the unit. Because of his airways and the mucos he was just battling to hard to breath correctly so they put him back in ICU too let him rest. He will stay in ICU until the mucos gos away. This should be pretty quick as his cell growth is good. Also his kidneys are doing well.
Not the greatest thing to have him in ICU but he is sure is resting nicely and sounds much better. Poor little guy was wasting all his energy just trying to breath. Now he can focus it on healing and cell growth.
That is all for now. Please keep praying for our family, especially for the little guys cells to keep growing!!! I am sure Nancy will update later and you can all get the dose of novel that you are used to reading!!
Love Sam, Nancy and Nana
Friday, April 18, 2003 10:25 PM CDT Day T+14
WC 0.2
Happy Birthday Nolie!!!
Nolan has been alert today but in a lot of pain. Daddy is here and with him now. Hope you get some sleep! We seem to have turned a corner, although he is still very uncomfortable and has a fever, he was awake most of the day. Something we have not seen in a week. His kidney function improved a little today, so the doctors seem encouraged by this. He also got rid of some of the mucus in his throat(use your imagination of how he got rid of it). He still does not like to be touched much, I think it hurts him. Although he let daddy sit and hold him for a long while and when I left the hospital tonight he was sleeping on daddy. Nolan is so grumpy that we only opened one gift and took a couple of pictures. We have decided to have a pretend birthday in a day or two when he feels more like ripping open the gifts and playing in the cake. Thank you everyone who stopped by to see Nolan today and for all the gifts(he will open later). Also thanks for all the wonderful guestbook entries they are so encouraging and I love to read them.
We are praying for 0.3 for tomorrow! I was a little disappointed about not gaining cells today, but atleast we did not loose any. Thank the Lord for that. I pray that we start the upward climb and keep going. I pray the mucusitis will go away, it has made him miserable. I feel much better tonight, like we may have missed the PICU by a small margin. He seems so much better than last night. Praise the Lord.
I have an urgent request tonight, I just talked with little baby Noah's dad, Noah has lost his engraftment. We are devistated by this news. This does not leave them with many options. Please pray hard for them as they face difficult days. They are trying a last ditch effort but the doctors did not give them much hope. Pray for the Lord to heal Noah and amaze the medical staff. He is such a sweet baby and has had so many things to overcome. Pray for their peace, as a parent down the hall from them I know we could be facing the same things in days to come I pray for that peace for all of us here on 5200. Again their website is www.caringbrige.org/hi/noah I am sure they would appreciate the prayers and words of encouragment.
I am so glad Sam is here, I rest easier with him here. I am at the apartment tonight and sort of feel guilty because Nolan is so fussy tonight. I look forward to a night without someone coming in every hour, not that the nurses are loud but I just sleep lite these days. I can not wait until tomorrow night we are going out with Andrea and Todd, Alex's parents from down the hall. We may even sneak in a movie while we are out if Nolan is doing ok. I pray so hard for my little guy, that his pain will be over soon and that his little smiles come back too. I did all the tricks today to make him smile and not one was in there. I hurt to watch him thrashing about in his crib with pain or discomfort so unbearable. You can hardly move him without causing him to cry out and he shakes all the time. He did sit without assistance and play in the bed for a while. He was reaching for his toys and that is a good sign.
Well that is it for tonight, I am going to enjoy my night off and get some much needed uninterupted sleep. Thanks for checking in on us. Pray Pray Pray. This is all about Him, help us not forget that.
Love, Sam, Nancy, Nolie,and Nana
Thursday, April 17, 2003 Day T+13
WC 0.2 !!!!!
Grow Cells Grow. We are on our way. Besides having a white count of 0.2, Nolan has had another long tiring day. He is still having some problems breathing. They have now put him on helium and oxygen mixed. It is supposed to be easier for him to breathe in than regular oxygen. He still breathes like it takes everything out of him. He is having some kidney function problems too. My big boy got a lot bigger over night last night. He looks very puffy. The doctors think he may be a little dehydrated so he was given extra fluid tonight. The poor baby has a tube in his nose, three tubes out of his chest, three leads for a heart monitor, a pressure cuff, and a toe pulse oximeter. You can hardly pick him up without ripping something off. He is still in a lot of pain. I have hit his extra pain medicine button so many times today trying to get him to a comfortable point. I hope tomorrow he is doing much better for his birthday. I hate for him to be so miserable. It is like every inch of him hurts, when we touch him he just cries. I have a cute little picture of him in the tub right before we left Colorado, he is smiling his beautiful Nolie smile, and I want to see that smile. I miss his little droopy eyes following me around and smiling when I look his way.
I am having a hard week; I have become a little homesick. I want life to go back to the way it was. Some days I feel we will never get that life back, maybe we don’t want or need that life back, maybe God has a new life in stored for us, I don’t know. I do know our lives won’t be the same when we go home, for this experience has changed us. I think we are more appreciative and know the blessing of our life. I have learned of so many people, parents like me who have much worse situations that they deal with day to day.
Tomorrow is Nolan’s 1st birthday, I have sat here tonight reflecting on his first year, most of it was a very good year, Nolan was sick a lot of the year and we got the worst news any parent ever has to hear, but Nolan’s first year with us has given us much joy and love. We are praying that he will remain with us for many birthdays to come, but know this may not be Gods will for him and will somehow deal with that when the time comes. For now we are pursuing what we believe to be the best possible care available. Each day with him is a gift from God; I am privileged to be the mother of such a wonderful child. I often ask why me, not why did this horrible thing happen to me, but why I am so blessed to have this child. I am not worthy. My life would not have been complete without Nolan. He is the best of Sam and the best of me with God in the middle, what a great combination. Please continue to lift Nolan up in prayer, especially tomorrow on his birthday, I would like nothing better than to see my precious boy smiling, laughing and having fun the way it is suppose to be on your 1st birthday.
Sammy arrives tomorrow afternoon!!!!
Thanks for checking in, it is always nice to see the counter at the bottom of the page. Even though many of you do not sign in I still know you are there. We thank you too. I love the Guestbook entries; they somehow always make me have a tear. Thanks.
Pray for wc 0.3 tomorrow.
Love and Blessings, Nancy , Nolie and Nana
Wednesday, April 16, 2003 8:09 PM CDT Day +12
WC 0.1 Yeah!!!! Grow Cells Grow
Today we are growing cells. Wow, didn’t know we would be this excited over 0.1, but hey this is better than <0.1 that we were at yesterday. Nolan has had another day of rest, I hope this is not becoming a habit. He slept through most of his therapy session today, but he did sit up for it. We have put him in a slightly reclining seat in his crib to sleep now, so that he can keep his airway open better. We had a little problem this morning but after a couple of breathing treatments and some intense suctioning things sound a lot better. They changed up some of his meds today, but other than that things have settled down and I think we should have a good night.
This week seems to be dragging along, maybe because Sam is coming in on Friday. I can’t wait. It will be such a short visit but I will take that over nothing at all. He is planning to bring the kids back in May, maybe for the Rainbow of Heroes Walk on May 3rd the walk is to benefit the Duke PBMT Family support Program (this program provides best buddy’s, CellMates, Salon Day, pagers, phone cards, community meals, ect.) Anyone that would like to make a tax-deductible donation you can go to www.giftrecords.duke.edu make sure you mark “Cancer Center” and under comments write “Rainbow of Heroes Walk and Samuel Nolan Ramsey or Send a check payable to “Duke PBMT – 03RH” and Mail to Duke PBMT -03RH, DUMC 3350, Durham, NC 27710. I think Sam and the kids plan to walk for Nolan.
I miss my Boo Bear and Coopy. In case you don’t know that is Kenzie and Cooper. Everyday it seems harder and harder to be away from them. I want to know about their day, I want to know what they are wearing, I even want to clean their rooms (am I crazy or what). I can’t wait to see them again. I am fretting about how the Easter bunny is going to visit them this year. Sam will be here with me, so I will have to instruct Uncle Bubba on being a good bunny. Boy it is hard to coordinate things like that from here. I just want to go do it myself.
"...My Father, if it it possible, may this cup be taken from me. Yet not as I will, but as you will" Matt 26:39
Well that’s all for tonight, my dinner will be here shortly.
Love and Blessings, Nancy, Nolie and Nana
Tuesday, April 15, 2003 8:54 PM CDT Day T+11
Grow Cells Grow!! Today has been very quiet. Nolan has slept all day, not even waking for diaper changes. The doctors are not concerned, they think he is catching up on some much needed sleep. The fevers seem to come and go now and the rash is very light. I have been told that some kids sleep a lot right before the cells come in. Sooooo maybe tomorrow !!!! We are still having breathing treatments but they changed it to every eight hours instead of four. They seem to be working and I think Nolan likes sleeping under the tent. He probably feels safe, like no one can get at him under the tent.
Pray for our continued strength and endurance. Some days seem to last forever and August looks so far away. We seem to be jumping hurdle after hurdle, Nolan remains strong I pray my sweet boy will return quickly. I am so glad he won’t remember any of this.
Nolan will be one on Friday, I can’t believe it has been a year. Sam is coming in on Friday afternoon and we are going to have a little party for Nolan that evening. I hope he wakes up for it!!
The Lord continues to remind me everyday he is in control. He is my strength, He is the smile on my face, the friendly hellos I speak, He comforts me when I cry, He helps me think of others in need, He helps me to be thankful. I depend on him for every need in my life because I am weak at this time and need him to pick me up and carry me to the higher ground. If I try to take control of my life I fail. He has been so faithful and I know he will be with me to the end.
“I will be with you always even until the end of this age.” Matthew 28:20
Love and Blessings, Nancy, Nolie and Nana
Monday, April 14, 2003 8:21 PM CDT Happy 7th Birthday Cooper!!! Mommy misses you! I Love you!!
Day T+10
Another day of fever and rash! Nolan has been sleeping most of today, his fever has been lower today but has started its climb up this afternoon. He is also having some trouble with the mucus in his airway, so the doctors decided to give him some kind of breathing treatment every four hours then he has to sleep with this box around his head while hydrated oxygen blows in. Sounds fun huh? Well he is doing pretty well with it except when he wakes up he gets scared. His oxygen levels have been a little lower today mostly because of the mucus and swelling in his throat. The rash is everywhere, the doctor said he glows he is so red. This is good, I guess, but Nolan is miserable. They prescribed a couple of creams for us to put all over him and this seems to help. They boosted his steroids tonight to try and stop the fever, of course with every new medication there are new side effects with new side effects comes more medications to deal with the effects. It is too hard to keep up with all the different meds and know what each of them are for. That is Sam’s job. The new steroid dose can make him really crabby and the doctor said it will probably be a rough couple of nights. Well we keep praying all this fever and rash will produce new cell growth. It will all be worth it in the end.
Today was salon day on the unit. Every three weeks a local hair stylist comes and cuts or colors hair for the caregivers on the unit, so today I had my hair colored and cut. She even knew what the Chi was!!!(The Chi is a straightening iron) I am now once again sporting my reddish straight hair. Little things like this make life here a lot more normal. It was almost like being at a real salon, I sat with color on my hair while my friend Andrea got hers dried and styled. Thanks Abby.
Speaking of my new friend down the hall, Andrea is Alex’s mom. Alex is five and here for her second transplant. She reminds me of Kenzie. She is so sweet, everyday she comes down to see Nolan through the window in the door. Her mom has been taking good care of me, ordering dinners for me and running to Target. This is the couple that Sam and I are going to go to dinner with on Saturday.
Thank you Winona for the care package of books, journal, & pillow that was so sweet and I appreciate it very much.
Well I better grab some sleep while I can.
Love and Blessings, Nancy, Nolie and Nana
Sunday, April 13, 2003 8:22 PM CDT Day T+9 Grow Cells Grow!!!
Nolan has had another day of high fever. He peaked at 106 around 3:30 am. We now have the air blanket (not really a blanket, it is a blue tube thing that goes on the sides of his bed and blows cool air all around him) He really doesn’t seem to mind it much, he has been very lethargic today, sleeping much of the day. Still holding on to the little balls (even in his sleep), he tried to play a little but now needs assistance to sit so it was not as much fun for him, he also shakes when we sit him up I hope when the fever goes down he will be back to his old self. I ache to see him smile today. I just don’t think he has it in him. Our low temperature was 101. Wow never thought I would think that was good. But here the normal good doesn’t always look that good. He looks pitiful laying in his crib with no clothes except diaper and his line dressing (we have a new kind of line dressing right now, His sites look puffy and red so we are now having to change them daily and put some medicine on them) I took some pictures of him sleeping with the cooling tube in his bed holding on to the balls. I will try to get them on the photo page sometime this week. He is still cute as a bug even when he is very sick.
Today as we took care of Nolan, making sure he was a comfortable as we could make him, I started thinking of the old hymn Count Your Many Blessings and I mentally started making a list of all the blessings I have counting them one by one. As my list grew I reached for a pad of paper and started writing them down, here are just a few: Insurance to pay all of transplant bill plus most of housing
Nolan’s good disposition, smiling through most everything
Marybeth – a stranger, called from God to come care for my children while I am gone
Many friends donating air miles so my kids can fly to see me often
ICAT being so flexible and generous with Sam
Spending money coming in the mail
Mom coming for extended period of time
Wonderful, loving nurses who really care about Nolan and me
Dedicated, brilliant doctors
Duke University Medical Center
Other Moms here that I connect with
Shawn and Michelle moving to Colorado (keep praying for this reality)
Holly Strickland
Andrea Bell one of the best neighbors ever.
Orchard Glen Subdivision – the best neighborhood ever, cooking meals until June so Sam doesn’t have to
Bunko girls
Pastor Dewayne and Beverly Bartley
Mountain View Southern Baptist Church
First Baptist Church Katy & Choir
A Christian owned ballet school for Kenzie – Reverence and Ms. Vera
Supportive family, in-laws, extended family
Supportive strangers
A free Country
My three beautiful children
Sam
And my salvation
I could go on and on but I think y’all are probably bored hearing about my many blessings. You can see my cup is running over with blessing from the Lord. I try to count as many everyday as I can, even the small things that most would not see as blessing like holding my feverish son until he falls asleep, cleaning mucus from his throat so he can breath, changing yucky diapers and dirty sheets at all hours, sleeping only minutes in a night I treasure some of these blessings the most because I can still do all theses things for my baby. I know so many who do not have that privilege any more and would give any thing to clean up throw up at 2 am.
May you all reflect on the many blessings in your lives tonight and give thanks to the one who provides them.
“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete not lacking anything.” James 1:2-4
Love and Blessings, Nancy, Nolie and Nana
Saturday, April 12, 2003 11:33 PM CDT Day T+8 ** Be sure and check out the new photos 4/12/03
I will try to be short tonight. It has been a long day and I am tired. Nolan has been very sick today. His fever has been as high as 105.8. We have had wet gauze all over his body and cool air blowing over his head. His heart rate has remained around 200 all day. The high fever started about 3:30 am this morning and has not been below 102 all day. He also has had a lot of mucus today. Despite the fever and mucus Nolan has been sitting up in his crib playing with his ball toy. He really loves that toy and holds on to the balls while he sleeps. He even smiles here and there, amazing kid. The doctors have changed him to a new antibiotic(don’t know the names of the silly drugs). They do not think the fevers are from anything but cells growing. He also has a little red rash this too is a sign of cell growth. Pray for Nolan that the fevers won’t be too high and that he won’t feel so bad. We could start seeing his white count come up over the next few days. Everyone here has signs on the doors that say Grow Cells Grow. We too have added the sign to our door, complements of best buddy Jennifer.
Please continue to pray for baby Noah. Pray that Nolan’s cells will grow. Pray that I will remain strong and in good health. I have met three of the other moms on the unit over the last few weeks, they are all so encouraging and it is nice to have someone who really knows how I feel day to day. Pray that we establish a close bond that will see us through the rocky road ahead and that we are able to build one another up and encourage each other.
Also continue praying that Shawn and Michelle will move to Colorado, it is working!!!! Shawn has a second interview in Boulder on Monday, pray for him to get that job!!! Next we need to start praying for the house in Dallas to sell quickly so they can all move together.
Thank you Shawn for updating the pictures on the photo page, they look great. The pictures are of Nolan’s Transplant and his new hair cut, there is also a shot of our friend Molly and her Mommy and Daddy(another hurler family) The pics are not in any order, so I will give you a little description. The ones with Nolan in Navy Thomas shirt are transplant day, Nurse Jennifer with Cord Blood(transplant bag), The nakie pictures are of Nolan getting his head shaved and the one in red is Nolan’s new look. Check them out. Also check out Nolan’s smile quilt, there is a link at the bottom of the page.
Love, Nancy, Nolie and Nana
Friday, April 11, 2003 7:00 PM CDT Day T+7 ***New Pictures in photo album
Nolan had a very restless night. We slept in 15 minute increments. He would awaken with pain and I would give him a shot of morphine, he would settle down for about 15 or 20 minutes and awaken again. Finally early this morning, around 4:00 am he started running a fever. Fevers are good I am told. That means soon cells will grow!!! We got him comfortable and he has been a little lazy all day, snuggling with Nana and napping. He seemed liked he felt ok in the middle of the day when Jennifer, his best buddy came to play with him. His fever remained down until a little bit ago and it is slowly creping up again. So I anticipate another long night. We had a viral battery test today because Nolan has had a runny nose for several days; they are just making sure he does not have a virus. Still no sores in his mouth, this is really good, the more I hear about mucositis the more I know we don’t want it.
I again ask you all to lift up another one of our cellmates, I have mentioned him before, but I know his family could use the extra prayers. Noah is not feeling well at all, his parents seem at wits end. They know God is in control but it is still hard to watch your child screaming in pain and not be able to comfort him.
We seem to have adjusted to life on the unit, of course I have not been totally alone since the first couple of days, it has worked out that someone has been here everyday. Isn’t my God so good? I think I would still be ok even without someone here. I have tapped into the Rock-a-bye ladies and we have a great best buddy, but some how after last Friday things changed in my mind about being here. This is Nolan’s chance of a normal happy life, so if I have to suffer a little loneliness, run down the hall to tinkle at 4am, eat greasy yucky food at weird hours, shower at 2 pm or am, have curly, frizzy hair, wear no makeup and loose a little sleep, so what. This is for Nolan and he is worth every inconvenience I can think of. Of course I may still complain sometimes but I really would do it all again to have my Nolan for many years.
Again the Lord placed a song on my heart just when I need to hear it, I got in my car the other day while Nolan was still in PICU and this song was in the CD player:
Call on Jesus
by Nicole C. Mullen
from "Talk About It"
I'm so very ordinary
Nothing special on my own
I have never walked on water
I have never calmed a storm
Sometimes I'm hiding away from the madness around me
Like a child who's afraid of the dark
But when I call on Jesus
All things are possible
I can mount on wings like eagles and soar
When I call on Jesus
Mountains are gonna fall
'Cause He'll move heaven and earth to come rescue me when I call
Weary brother
Broken daughter
Widowed, widowed lover
You're not alone
If you're tired and scared of the madness around you
If you can't find the strength to carry on
Call Him in the mornin'
In the afternoon time
Late in the evenin'
He'll be there
When your heart is broken
And you feel discouraged
You can just remember that He said
He'll be there
©2001 Wordspring Music, Inc./Lil' Jas Music/SESAC
Love and Blessings, Nancy, Nolie and Nana
Thursday, April 10, 2003 6:41 PM CDT Day T+6
A great day for Nolan. Nolan has been very much his old self today, smiling, laughing, playing. We are so glad to see this side of him again. Last week was rough but we are by no means down and out. He has not needed as much pain medication today. So we hope to wean that down over the next few days. We are also thankful we do not really have any signs of mucositis ( a nasty thing that causes all kinds of problems) Please pray that we escape mucositis altogether. Hurler kids do not seem to do well with this because is causes so much mucos in the airway. Nolan has had high blood pressure and they are giving him medication to help with this. The Nurses have all been having fun with him today, he is so playful and loves the attention. He and Nana took a two hour nap this afternoon, they were so cute. We hope for more days like today, days like today make up for the yuky ones.
I am so thankful for all our friends and family that have come running to help us during this time, you may not think you are helping but every call, card, thought, prayer, e-mail, guestbook entry helps more than you will ever know. Some special thank yous go to: Nana for coming to help so quickly.
Uncle Bubba for taking the kids home and staying with them
Andrea all the stuff you do!!!there is to much to name it all, but I know your crown will have more jewels than anyone.
Grammy and Grandpa for doing what ever we need you to
Aunt Chelle for being there when I need you and helping me with the website!!!
Holly for being my shoulder to cry on.
Momme for checking on us so faithfuly.
Marybeth for being there for my other babies, without you they would be in daycare.
And the countless others, I can not begin to name you all, but we are so greatful.
"Hear my cry,O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe." Psalm 61:1-3
Love and blessings, Nancy, Nolie and Nana
Wednesday, April 9, 2003 7:34 PM CDT Day T+5 ( I think)
The day has been long, but productive, Nolan is back in his home away from home on 5200. We were so glad to be back, everyone missed us while we were gone. Nolan started out today feeling really bad, he is in a lot of pain. When we got "home" the first thing we did was shave our head(well not really our head, Nolies head). He looks very cute and seems to like the look. I took some cute pics of the head shaving and him all cleaned up afterwards (if I ever figure out that silly camera and computer I will have new pics, Michelle is building Nolan a picture page that will link from our site) He likes being back in his room with all his nurses and toys. He is on morphine for the pain and seems to feel comfortable as long as we give a little extra dose every hour or so. I have my cute, smilie Nolie back once again. I just love him so much. I am even glad to be back home in our little room, as much as I complain about being here, I have to admit it is nice being back.
Sam has made it home to Colorado, I know he will be busy preparing for Coopers 7th Birthday party on Sunday. I hate missing it, but I know Dad will do a great job with all his help(Bubba, Andrea, Marybeth, Kim). Sam is planning to return for Nolan's 1st Birthday next Friday, I do not think the kids are coming this time. I think Sam plans to bring them again in May. I can not believe it has only been two days since they were here. I can't wait until May!!
It is so nice having Mom here, it really makes life on the unit easier. We can trade off and come and go out of the room as we please. I plan to spend the nights here at the hospital, and Mom be here with me during the day.
We have so much to be thankful for, Nolan coming out of PICU so quick, everyones return to home safely, all the calls, e-mails, prayers, visits while we faced this unexpected bump in the road. My heart is peaceful tonight for I know Jesus is right beside Nolan and me as we travel on. I feel more prepared now for anything coming our way.
Please continue to pray for us daily, it means so much and I can feel it when so many are praying. Nolan has many challenges coming our way, we had our first glimps Friday and pray we won't have to go that way again. Nolan has already had 4 surgerys, 2 visits to PICU, countless sticks, more drugs than Walgreens stocks and 15 days in the hospital and still counting all before his 1st Birthday. Poor little guy, he deserves so much more than I can ever give him for the things he has endured and will endure.
Nolie just fell asleep so thats it for now, I need to catch a few winks.
Our Love to you all, Nancy, Nolie and Nana
Tuesday, April 8, 2003 8:39 PM CDT Day T+4
Hello, well one more time, we hope to get out of PICU tomorrow!!! Nolan was taken off the vent this afternoon and has done beautiful. He was on blow by for several hours, but now is breathing on his own while his stats stay where they should be. He is in quite of bit of pain and they have started a PCA (a steady drip of pain meds that I can add to if he needs more by just pushing a button). He is also losing his hair! It looks like a cat laid on his bed today. We will have to shave his head tomorrow. His is doing really well. I can not wait to get him back in his room where we can all rest better.
Sam is going to leave tomorrow, I can not think of anything to keep him here. I will miss him so much, I got used to him being around again. Mom will be here with me so it won't be so bad on the unit, but I wish Sam were staying too. The kids are home and seem to be glad. I miss them already. I get teary thinking about how much our family will be apart this year. Is it too much to want all my family together? I know we have things to do and a purpose for the whole ordeal, but sometimes I just miss being at home, talking to the neighbors, going to ballet and soccer practice, giving Nolie a bottle, shopping,Church,Praise and Worship, Ladies rehersal, praise team, going to eldora to ski, Libby playing at our house, talking to Holly for two hours long distance, Sammy and sleeping on my own pillow!!!!!! I try hard not to complain but sometimes the continuous hours at the hospital get old. I wouldn't trade being here with Nolan for anything, we have had a lot of special time together. He is my joy of each day. He is a little champ, enduring all this pain I am sure I would not fair as well if it were me having to go through the things he does.
Thank you all so much for the prayers, the Lord is blessing us with wonderful people in our path everyday. Today Sam and Nana met a new hurler family that will be coming to the unit soon, he starts his two week evaluation today, He is also 10 months old. Thats how old Nolan was when we got here. I am sure they will be great friends. I can not wait to meet them. We will be praying for them.
Well I think that is all, I must run back to the hospital and trade out with Sam, he is sitting with Nolan in PICU, Nolan gets a little fussy if we leave him. Pray that I will remain rested and ready to take care of Nolan in the wee hours. His nurse will be with him also, but he does much better if one of us are there.
Love, Sam, Nancy, Nolie and Nana
New Apartment address: 300-102 Glengary Court, Durham, NC 27707
New Phone number: 919-490-5283
Monday, April 7, 2003 7:45 PM CDT Day T+3
Nolan's day has been good. Although we did not get off the vent yet, we are hopeful that it will be soon. The doctors are being cautious and want to move slowly. His lungs are not fully inflated and they would like to correct that before removing the vent. They are weaning him down little by little. They tried to move quicker this morning but Nolan had other plans and dropped his stats so they bumped it back up and started from there. He had a peaceful day and only really tried to wake up when the nurses moved him around. Pray he will be removed tomorrow so we can get back to the unit by Wed.
Mom is staying the night with Nolan tonight, I hope we can sleep without worrying. It is the first time Sam or I have not been there. It is very strange for Sam and I to be somewhere together without Nolan. We almost don't know what to do. Anyway thats about it for now, nice and calm, thats the way we like it.
Thanks for all the prayers!!! We have cherished all the entries on the guestbook, they really make our day.
Love, Sam, Nancy, Nolie & Nana
Sunday, April 6, 2003 8:30 PM CDT Day T+2
Things are really looking up for Nolan. He is on the lowest setting on the vent. They switched him from the oscillator to the vent around 10:00 this morning. He made the switch without at hitch so they will try to take the tube out in the morning and see how he does. He may get to go back to the unit tomorrow night but probably Tuesday. He looks really good, minus all the extra tubes. He keeps trying to wake up so they keep having to drug him to keep him quiet and still.
Sam and I are very tired, seems like neither of us can sleep, Sam has been staying at the hospital at night and I stay with Cooper and Kenzie at the apartment. Hopefully when Nolan gets back in our room on the unit, we will both be able to rest better. The kids leave in the morning with Uncle Bubba. I will miss them so much, but I know they are excited about going home, back to school and friends. Sam and I are actually going to go have dinner alone tomorrow night. Mom is going to stay at the hospital with Nolan and let us have some much needed time together. Thanks Mom!!!
Thank you all for praying keep up the great job. The Lord is answering. He has been so loving and good to bless us with answered prayers.
Love, The Ramsey's, Uncle Bubba and Nana
Saturday, April 5, 2003 9:24 PM CST Transplant Day + 1
I do not know if the numbering system is correct. I have such a problem with that!! As you can tell this is Sam! Well I just went and saw Nolan again and he is doing very well. I will go visit him one more time tonight then leave him alone. They are trying to keep him sedated but he does not much agree. He keeps waking up and obviously thinks the big tube should not be in his mouth. This is in the midst of heavy morphine dosage. He is a fighter and wants to breath on his own. In his case,fighting will always be a good thing!! Anyway, I try not to go in too much as he can hear me and it makes him wake. They want to keep him settled so his lungs rest.
Now, a quick "non medical" description of what doctors think happened. He did not reject anything he had an acute reaction right after the tranplant. There should be no problems with the new cells. They think his lungs simply got irritated with new cells, causing the vessels to become porous, dumping fluid into his lungs. This caused problems and quickly. When he was first put him on the oscillator he was at 70% oxygen need. This morning he was down to 40% and tonight he is at 27%. This is awesome as air is at 20% or so. All his levels and organs are testing normal and everything seems to be going in the right direction. Keep praying!! The doctors, both ICU and PBMTU are amazed at how quickly his body bounced back. They are trying not too be overly optimistic but they said they cannot help themselves. They are weaning him off oscillator and he may be on regular vent tomorrow. Best case he could be back in his own room on unit Monday or Tuesday. Keep praying!
Well I think I will go now. Nancy I love you AND Michael this Texas/Syracuse game is a good one. It could go either way!! I was sitting here watching the game and thumbing through the Bible. I stumbled on a Psalm I taught a Sunday School Class on three weeks ago. I teach a college age Sunday School class at our church and titled the lesson, Prayer "Why Bother". Psalm 91 tells us exactly why to pray constantly and specifically and bother!
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, "He is my refuge and my fortress, my God, in whom I trust." Surely he will save you from the fowler's snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of the night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes and see the punishment of the wicked. If you make the most high your dwelling - even the Lord, who is my refuge-then no harm will befall you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread upon the lion and the cobra; you will trample the great lion and serpent. "Because he loves me", says the Lord, I will rescue him. I will protect him, for he acknowledges my name. He will call upon me, and I will answer him. I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.
Have a great evening!!
P.S. Sam and I Posted almost at the same time, If you would like to read my entry, check the journal history. We are too much!!! Everyone just gets the treat of reading both our thoughts!!!
Saturday, April 5, 2003 8:55 PM CST Day T+1
I know a lot of you have been checking today to see how things are going, I sorry to keep you all waiting. I wanted to wait to be able to give the best update with the lastest information. Nolan has impoved by leaps and bounds, the doctors are very impressed and now believe we may be able to get back to the unit this week. Yeah God!!
Nolan is still on the oscillator but they have him down to 27%, so that means they many be able to wean him back to a vent tonight or tomorrow. Then wean him over the next several days off the vent and back to 5200. We really want to get him back there quick because he now has no immune system and he is much safer on the unit. Sam has been making sure all the PICU nurse are following all the rules were Nolan is concerned. One of the other moms called him Mr. Clean. The fluid in Nolan's lungs has improved greatly also. The doctors are so please with him, we are too!!! Go Nolie Go!!! They do not think any of his organs were damaged. They are treating him for a bacteria that came up in one of his labs, the doctor said he did not think he really had this particular bacteria, but we are going to be safe and treat it anyway, we can not afford an infection at this point.
We are so thankful for all the prayers lifted up on our behalf. The Lord has been so faithful and lets us know he is there. Please continue to pray for Nolan, although everything sounds so much better and they are impressed and glad, he is still on an oscillator and in PICU. We are very positive, but we do understand that he is still a very sick little boy.
My Mom(Nana)and brother(Uncle Bubba) arrived this afternoon. My brother is here to fly Cooper and Kenzie home on Monday. Mom is here for the next three weeks to help me out with Nolan. Sam is planning to stay until Wed. or Thurs. of this week. Then he will be back sometime around Nolan's birthday I think.
Thank you all for praying for Nolan, and all the calls and e-mails today, we may not responed to each call or e-mail but we get your messages and charish each and every one of them. One day I will responed back when everything settles down again, of course that may be when we get back to Colorado so don't hold your breath.
Again I close with Isaiah 43:2-3 "When you pass through the waters, I will be with you;and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, you Savior"
Love, The Ramsey's, Nana & Bubba
***We have moved from our Apartment at Alexan Farms, we had Stuart Little and Family living with us and decided they could have the apartment**** We have moved to Alexan Place but I am not sure if this address will be permenant so I will give a new address later. If you have mail for us please just send it to the hospital address. Thanks.
Friday, April 4, 2003 11:09 PM CST Day 0
Transplant day! Where do I begin. Our day started out as a joyful celebration of the new life Nolan was being given. We all were so excited, took mounds of pictures (which I still can not figure out how to download), video, everyone was in high spirits as the last of the little bag empty into Nolan. Then something went very wrong. Nolan had a severe reaction to the transplant and his lung filled with fluid within seconds his oxygen level had dropped into the 20's. The nurses that were in the room hit code and I fell apart. We were very foutunate that our best buddy Jennifer had come for the transplant and she wisked the kids out of the room before things got to hectic. Nolan now has been moved to PICU where he will be on a oscilator(one step above from the vent), they hope to wean him back to the vent in four or five days. Boy we sure did not expect to be here today. The images still flashing through my mind, I still don't really understand what happened and why. The nurse and doctors here have been so great. Within minutes of the code button being hit we had masses of medical staff swarming Nolans room and emotional support staff for me. I was amazed at how many people were involved with his care. We had so many people to support us as we stood helpless watching more and more people rush down the hall to help Nolan. Thank you Tina, the PICU Chaplain, best buddy Jennifer, Nurse Jennifer and the other PBMTU parents who left their own children to come and comfort me.
In PICU he seems to have bounced back quickly, meaning his organs do not seem to be damaged from the episode, excluding his lungs, they are still full of fluid, the hope is to have the oscilator push the fluid out of his lungs and let them heal before putting him back on a vent, then to wean off that too. It is still really too early to make much out of everything. The doctors are waiting on some test done on Nolan's kidney's to see how much damage was done to them. Dr. Szablocs thinks the new cells should be ok and still go do their job.
Again, Sam and the children are staying for awhile longer or until we can figure out how to get them (the kids) home without breaking the bank. Sam wants to stay and I am glad, I do not want to be here alone. We now know exactly why Sam had the urgency to stay, not only my cold but God knew I would need him today, my rock. Sam was a steady, calm presence by my side as the whole ordeal unfolded.
"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, you God, the Holy One of Israel, your Savior" Isa.43:2-3
Please pray hard for our little man, that things will improve quickly and we can get back on the unit before to long. Our biggest fear of course is Nolan being on the oscilator for any length of time.
Love, The Ramsey's
Thursday, April 3, 2003 8:27 PM CST Day 1-T
Tomorrow is our big day. Nolan’s new start, tomorrow he will get his chance to have a normal life. The road will be long and hard as we wait for the cells to grow. Then there is the ever present threat of infection. The kids, Sam and I will all be present tomorrow to watch the little bag of hope flow into our little baby. He should be getting the transplant about 10:30 or 11:00 Eastern time. The kids and I will be masked and gloved so we don’t expose Nolan to any germs we may be carrying. Keep praying for my cold, I feel somewhat better today, I still sound sick. I will try to take some pictures of the transplant and add them to the website tomorrow, so we can share the experience with all of you. It is a very simple procedure, nothing more than an IV really. But the significance of the whole thing is what is so great. It signifies life for Nolan.
Please keep us in your prayers tomorrow and the days to come. We will still have many things to overcome after transplant. I do not have much to say tonight, I know ya’ll think that is not possible, but I think I said it all yesterday. Sam is still at the hospital with Nolan, he has not felt well today and is a little fussy. Pray for Sam, I know he is really tired and ready to go home to get some rest. Mom is coming in on Saturday evening to help me out for a while. Sam and the kids are planning to visit again for Nolan’s birthday and Easter.
“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior” Isaiah 43: 2-3
Wednesday, April 2, 2003 9:18 PM CST Day 2-T
Two more days!!! My heart arches to be at the hospital for the transplant; please pray that my “cold” will be short lived. It has been such a blessing having Sam and the kids here. Another God-cidence that Sam stayed. My life seems to be full of God-cidences. I love it when Sam updates the journal he is so positive and uplifting. I am so blessed to have a wonderful husband. Nolan is tolerating the ATG well or as well as expected. Some fever, a little rash, thrown up only once. Could be a lot worse. I can not see him today and probably not tomorrow. Pray for Friday. I miss seeing him daily. Pray he won’t change too much before I get back on the unit. Thanks for everyone’s continued prayers and constant checking on him.
I sat crying today reading some of the guestbook entries; I am amazed at all the people’s lives that Nolan is reaching. A while back (in Katy) I prayed the prayer of Jabez consistantly for sometime, I prayed that God would allow us to reach people outside of our immediate “church friend world” and bless us beyond our wildest dreams. I thought moving to Colorado was the answer to that prayer, we made so many new and wonderful friends, I just knew we were making a difference, but never in my “wildest dreams” could I think how far our boundaries now reach and will reach farther still. Many of you reading this now I will never lay eyes on and never know your name, but because of my loving Savior granting my prayer request you are now apart of my life and Nolan’s journey. The Lord is using Nolan for things we may never see, to bless people we will never know, to show our faith when all seems lost. I have met so many amazing people on this journey and we have only just begun. My God is so good. I can not praise him enough. Even though we struggle to understand why Nolan must endure this horrible thing, I believe the Lord will and is blessing him, our family and many of you because of it. For that we are grateful and thankful. We hold on to faith and hope. We know one day Nolan will have the life he deserves, whether it is here or in heaven, the Lord is in control.
I think of my friend Shawn (Reese’s Mom www.caringbridge.org/nc/reesecup ) and pray for her daily as she struggles through without her precious son. I think of all the people they as a family have reached and helped (me in particular). Reese’s life was a wonderful gift even though so short, he reached and blessed so many. I pray that we have only the opportunity to reach so many and show them that we have an awesome God that is carrying us when it is too much for us to walk. All of you that write on the guestbook and leave e-mails renew my strength with your words of encouragement and love. Whoever created caringbridge websites did a wonderful thing. It has been a lifeline in the storm of the century.
Thank you Lord for the awesome opportunity to be Nolan’s Mom. I can not imagine my life if he had never been born, I would not trade one moment. I thank you for the trust you have in me that you would give me a special Hurler child. Let me never forget who holds us in his hands and knows each tear that falls, each compliant before it is uttered every hope in my heart without voicing it. Thank you for sending your Son to save me.
“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” Psalm 56:8
Love and Blessing to you today. The Ramsey’s
Tuesday, April 1, 2003 9:53 PM CST Day something T - I dont know!! Its Tuesday I think!!
Well here I am again. Nancy is once again forcing me to update the journal. I am not as long winded as her though!! Kidding.
Anyway quick update on this week. As most know I was supposed to go home Monday but the kids and I decided to stay. Nancy had kept telling me to go ahead and go home and we were worried about Cooper missing school but my stomach would not let me leave! My gut feeling kept telling me to stay for what I thought might be complications from the evil ATG drug! By the way God works in my stomach a lot!! In any event guess what. Nancy went to the doctor today and is sick with a cold. She will not be able to be here for a few days! Guess what if we had left! Hopefully she will be okay by Friday and will get too see the transplant but in any event what a blessing that we decided to stay. Thanks Lord!
I am sitting here with Nolan well into the ATG drug. He has been sick but not that bad. His fever is steady at 103 (Not that bad) and he has not had any problems with hives, rashes, etc, so far! Also he has only thrown up once, add that to him urinating on me twice today!! Calgon take me away!! The great thing is Nolan and I have laughed a lot today. Even with puking, fever, etc, etc, that little boy still has a smile on his face!! If you really want to see the eyes of Jesus looking back at you all you have to do is peek into his crib. Wow, what can I say.
Oh also not to forget, Nolan did real well in his physical therapy today. He was laughing and playing and was a ball throwing machine all over the room. Watching him go through this has really taught me a lesson. Funny to what extreme we have to go to learn lessons, but simple victories are so important and so often overlooked. Lord help me to not ever overlook simple victories and simple things in my family's life. Also Lord I now know the true meaning of the Footsteps Poem. My family is in your arms and you are carrying all of us. Also, Lord thank you for the people you are putting in our path. I see Christ all around me and in others. Thank you especially for our neighbors across the street, you know who you are. Words cannot ever express nor money ever repay what you have meant to me and my family. God Bless You.
Goodnight and God Bless!
Monday, March 31, 2003 6:26 PM CST Day 4- T
Four more days to transplant. Sam and the kids decide to stay here until Saturday. I think Sam is worried about the ATG drug that will be given tomorrow. So we are switching off every other night until Saturday. It sure makes it nice to have someone here. Today has been really good for me. It is my day at the hospital and I have already had a visit from First Baptist Church Durham (thank you Tina, watching out for me from Katy!) and a rock-a-bye lady came in around lunch so I left the room for almost an hour. I am doing what Sam does when he is here, whenever the nurses come in I am leaving for a few minutes (potty breaks). It really helps. Nolan is doing well, sleeping a lot today, I think the chemo is making him tired. They do an EKG before each dose of Chemo, this drug he is taking now can have damaging side effects to the heart. Please be in prayer that it will not effect his heart. That would be just one more thing to worry about. He is getting extra protein tonight to help get rid of some extra fluid in preparation for tomorrows ATG. He will also have a virus test tomorrow because his nose has started running, pray that it is not the beginning of a virus or infection.
Sam and the kids went to Chuck E. Cheese again. I took them on Saturday also. They are really going to be spoiled when they go home. I have really enjoyed having them here, they seem to have grown up since I left in February. We have been watching the Anne of Green Gables movies, they love them, especially Cooper he keeps wanting to watch the first one over and over. They are really excited about being here for the transplant. I am happy to be able to spend some extra time with them.
I feel so much better this week, I think just having someone here to share the load with has been a life saver. I feel more confident and capable to be here on my own. I praise the Lord for sending in the troops just when I needed them the most. From Sam, to Jennifer (our best buddy), to the rock-a-bye lady, to Marge from First Baptist Church. He knows my every need.
Nana is trying to schedule a flight for Monday, She is planning to be here for two weeks to help me during the day. Sam called her Saturday and asked if she would come earlier than planned. I think he is worried about leaving me here on my own. I must have really scared him last week. It is so nice to have everyone rallying around to support us.
I have a personal prayer request, Shawn and Michelle (Sam’s sister) are seriously looking at moving to Colorado. It seems to be working out with job searches and housing issues. Please pray for this selfish request, I would love having them near by. It has always been Michelle and my dream to live next door and be able to walk over and chat whenever we wanted. I pray that this will be a reality. Having family near when we go home would be a tremendous support.
Please continue to pray for all the other families here on the unit, I am slowly meeting more of them. I am sometimes overwhelmed with how many children face these horrible disorders and diseases. I sometimes forget how my life has changed and will be forever changed by Hurler Syndrome.
Love, The Ramsey's
Saturday, March 29, 2003 11:01 PM CST Day 6- T
Nolan has been enjoying the company of Daddy since Thursday night. He is still doing well. The Doctors have commented on how well he is taking it all. He has not had diaper rash that was expected, he is eating baby food that was not expected, he has not thrown-up or had any fevers, yet! We are so thankful that so far things are going well. They have warned us that the fun will start next week with the horse drug. He could have high fevers, rash, and vomiting. I hope he does the opposite and does well next week too.
Sam is having a hard time deciding if he should leave on Monday. He is considering keeping the kids here another week and staying until after the transplant on Friday. I of course would love to have to company and support but I don't want the kids to get bored and miss a lot of school. It is hard for them to go up to the hospital and be quiet and still while in Nolen's room. Nolan loves seeing them everyday, he just smiles and reaches for them. He has loved having Daddy here too. I think he likes having Sam with him in the room more than me!!! Sam has adjusted to life on the unit much quicker than me and seems to do just fine. I seem to have more trouble getting out of the room.
I have enjoyed the kids and will miss them when they return home. I wish there was a way for them to stay and all of us be together. But this is not the place for them.
Please be in prayer for some friends (Cell-mates) on the unit that are having a hard time, Noah is in PICU right now, I am sure his family could use the encouragement. Also, Andrew was re-admitted to the unit last night, he has had a long battle and needs your prayers. Also, just lift up all the families on the unit and in PICU.
Special thanks to the Salces for the bright cheery balloons, Nolan loves them and they make our room look better too. Also, let me take a moment to say some other "Thank yous" I have not had time to write out cards yet, that is on my list of to dos.
To the Grandmothers at FBCK for Change!! the book, notepad/pen, mints and Angels you blessed my heart.
To Rose, the books are great and will come in handy when the walls start driving me crazy.
To Andrea, for taking care of my gift shopping! and all the other things you do.
To Diane and Chris, the computer has been a wonderful gift! Sorry so long to say thank you, it has been the best thing anyone could have given us.
To everyone who has contributed to the Nolan fund.
To all who send us cards and well wishes.
To all of you who faithfully check on us everyday and send us notes of encouragment.
Last but not lest if I have over looked someone I thank you too. I just have a hard time remembering who I have and have not thanked but please know we are so gratful and thankful to all.
Love, Sam, Nancy, Cooper, Mackenzie, and Nolan
Isaiah 41:10 I am your God. I will strenghten you and help you; I will uphold you in my rightous right hand.
Thursday, March 27, 2003 10:17 PM CST Day 8- T
Today Nolan did pretty well. He had a session with the occupational therapist, they will be coming at least once a week. We also had sessions with the speech therapist and physical therapist yesterday. He is tolerating the chemo and not having any problems. He was a little fussy this evening. Nice for Sam. Yes Sam and the kids are here!!!!! Today was a great day, we got our best buddy, her name is Jennifer, she came and spent some time with us this afternoon and will be back tomorrow. I got out of the room more than once, had a shower at 4 am and had a real meal. What more can I ask for.
The kids look great. I sure have missed them. Sam is spending the weekend at the hospital. Be praying for him. I will be here at the apartment with the kids. They asked if Nolan had gotten his heart yet, I don’t think they get the whole cord blood transplant idea. We tried to explain the best we could. It was good for them to get to see him, he still looks pretty much the same. The next time they see him ( in about three weeks) he will look a lot different. Nolan was elated to see them. He was smiling and reaching for them. He is such a little ham. He loves all the attention they give him.
Thanks for much for all the wonderful entries to the guestbook. Ya’ll make me cry. I love the verses that keep coming up Isaiah 41:10 “I am your God. I will strengthen you and help you; I will uphold you in my righteous right hand.” I think I used this same verse the other night in my journal entry from a different translation. I am going to place these wonderful verses on the walls in our room. To remind me when things don’t look so good.
Nolan’s smile quilt is finished. His quilt is on the 5th page under Nolan. Check it out!
Well that’s all folks.
Until tomorrow.
Love, Nancy, Sammy, Coopy, Kenzie and Nolie
Wednesday, March 26, 2003 1:43 PM CST Day 9- T
We made it through our first day. We slept very little this first night. We will have to get used to someone coming in every hour or so. Nolan is somewhat better today, he woke up early (6:30) kind of grumpy but after some nice pain meds he seems to be resting comfortably again. I wish I could be so lucky. I slept well in 1 hour to ½ hour increments. Nolan seems to be adjusting to all the tubes and medications. There are a lot of medications and blood draws. Thank God for the central lines. Last night Nolan seemed very afraid of all the medical staff. He cried whenever someone entered our room. The late last night or early this morning rather he seemed much calmer and even likes to watch them draw the blood. He still won’t eat, but no one seems concerned they say that most of these kids lose their appetite. I am going to bring his bottles and formula from the apartment tomorrow. Maybe this will help if the bottles are familiar.
I seem to have a better handle today on myself. The nurses here have been great, answering my million questions. I am really praying for God to give me loads of grace and mercy. I just sit here and cry when I read all of the sweet entries to the guestbook; they mean so much to me. I have never been away from my family this long before and I have never had to totally take care of myself on my own. It has been a challenge for me. I know God is using this to grow me. For that I am thankful, I just wish I’d hurry up and grow. I am sure it will take me sometime to really get used to the routine of the unit. Nolan has been very attached since he got out of surgery I can hardly leave his sight, it has made it kind of hard to get out and meet other parents or even go get food (can’t eat in here either). I take back what I said about the hospital is always warm, our room is freezing.
Breaking news, Nolan just woke up and is drinking a bottle of juice. Yeah Nolan, good job. He still seems a little tired, not his usual happy self. Must be all the blood.
One more day until my family is here!!!!! We are so excited to see them. I have missed them more than I can say. For that matter I have missed everyone and everything, you gain a new appreciation for people and places when you are without all the comforts of home.
I had a moment I started crying because I just wanted to go get something to drink and go to the bathroom and no one has time to sit with Nolan, so I guess I will wait. I have only left the room twice since we arrived once yesterday at 6 pm and again 4 am. Sorry to be so grumpy, seems that Nolan and I feel just about alike. I don’t understand how people here by themselves ever make it. You would think they would starve to death or have some kidney disease.
Well that’s all the complaints for now.
Please keep us in your prayers. Pray for my attitude. I need to learn how to adjust my life to fit in here.
Love, Nancy and Nolie
Tuesday, March 25, 2003 2:15 PM CST Day 10-T
Well here we are, all checked in to our room on the unit. I have felt like I want to cry several times already. It is not bad; it is just a little overwhelming. I can not even go to the bathroom without someone having to know about it. (I can not use the bathroom in Nolan’s bathroom or shower.) Public bathrooms are not my strong point. Anyway, we are scheduled to get a “best bubby” I am not sure when. This will be helpful. The nurses have been great, they all seem very nice.
Nolan did great this morning during surgery. He only had to use oxygen for a short while after surgery and all his stats were really good. He is in a little pain this afternoon and has fussed a bit. He is resting right now. This is nice because I need a little time to get our things from the car and set up our room. We do have a couple of bulletin boards so we can put up cards and pictures on them. Our new address is Nolan Ramsey, Room 5201, Duke University Medical Center, Durham, NC 27710 our new phone number is 919-681-5201.
It feels good to be underway. I am nervous about the next few days getting adjusted to the unit and meeting the other parents( we haven’t met any yet) I did meet a couple of former patients their names were Hannah and Cassidy they both have hurlers and were transplanted 6 and 5 years ago. It was very encouraging to see such great success. I can not wait until Thursday, my big babies are coming, all three of them. It will be nice to get out and do some stuff with Cooper and Kenzie. I think Sam is going to stay pretty much the whole weekend with Nolan. What a great husband I have!!! Love ya! Sammy I have not found anyone yet to sit with Nolan so we can go have dinner somewhere but I am working on it.
Chemo starts at 4:00am in the morning.
Well I better go grab something to eat and get our stuff while he is still sleeping.
Thanks for all the prayers today, I really appreciate it.
Love, Nancy and Nolie
Monday, March 24, 2003 6:18 PM CST One day to countdown
Today Nolan had pre-op. Everything is ready. We go in at 6:00am tomorrow morning. Surgery will start about 7:30am. After Nolan gets out of recovery we will be checked into the PBMTU. I will up date shortly after we get settled to let everyone know who surgery went and give our new phone number and address. We still have the apartment so if anything is mailed there we will still get it.
Chemo starts Wednesday morning at 4:00am. I have lots of butterflies today and probably will tomorrow too. My Bible study has been so wonderful, everyday is seems to be just the right lesson for me to hear. Today’s lesson talked about no matter how out of control things appear, we are not to be afraid. He is in control. Joshua 1:9 – “Remember that I commanded you to be strong and brave. Don’t be afraid, because the Lord your God will be with you everywhere you go” and Isaiah 41:10 “So don’t worry, because I am with you. Don’t be afraid, because I am your God. I will make you strong and will help you; I will support you with my right had that saves you” and John 14:27 “I leave you peace; my peace I give you. I do not give it to you as the world does. So don’t let your hearts be troubled or afraid.” How appropriate the lesson today covered the exact feelings I was having.
Please be in prayer for us as we start the journey. Pray that we adjust quickly to life in the unit. Pray that Nolan will leave all tubes attached to him where they are. Pray that he handles all the medication well and has no harsh reactions. Pray for my peace. Pray for my health. Pray for my focus to stay on Jesus.
We thank each and every one of you that check on us daily and leave us words of encouragement you will never know how much it means to me!! I will try to update daily while we are in the hospital, so everyone will know ins and outs of our day.
Love,
Nancy and Nolie
Friday, March 21, 2003 9:44 PM CST 4 days to countdown
My heart is sad once more. Mckenzie, another little girl has earned her wings and joined the other little angels in heaven. I have been following her website since we got to Durham, she has had a long journey but now she rest in Jesus' arms. Please pray for her family they have been at this a long time. Her website is www.caringbridge.org/nc/mckenziefay. We have just began the journey and have already lost two. I can only imagine how much more we will see before we leave here.
Nolan is doing well, he is crawling alot now. Although he crawls on his fist, it looks kinda funny but he gets around just fine. Sometimes I think he gets frustrated with himself because he wants to be up walking or moving faster. He is also pulling up to his knees. He likes to pull up and chew on the coffee table. He is also teething! Ouch!
We will spend the weekend getting all of our things ready to move into the unit on Tuesday. It sure is hard trying to decided how much I can squeeze in there. We will be decorating Nolans room when we move in and would love to include pictures, notes, cards, etc. from all of you. If you would like please send something to brighten our room. I will post our new address at the hospital on Tuesday.
As lonley as we have been the last two weeks, I have to admit Nolan and I have had some quality time together. The Lord has blessed us, Nolan has been in really good spirits, laughing, giggling, playing, splashing at bathtime. I just love hugging on him. I love it when he falls asleep resting againts me. I sit and just watch as he sleeps so peacfully now . He hardly snores anymore at all. I brush his hair with my fingers praying that we will again have hair when this is all over. I love sniffing him after bathtime, he smells so good. I cherish these moments. Next week the rubber meets the road so to speak. I pray for more moments.
Please also pray for me I have been having a slight scratchy throat. I can not get sick at this time!!!! I am eating vitamins like candy. Pray for me to stay well the whole time we are here. If I get sick I can not stay with Nolan and this will be a problem. I will be here for the most part on my own and can not leave him.
"The Lord wants to show his mercy to you. He wants to rise and comfort you. The Lord is a fair God, and everyone who waits for his help will be happy." Isaiah 30:18
Wednesday, March 19, 2003 9:22 PM CST 6 days to countdown
Today Nolan and I are enjoying a beautiful view of the ocean. It is very windy and cold but it is wonderful. Thank you Suzi and Sarah!!! We have not been out to the beach yet because of the wind. It is almost too windy to even go out on the deck. I am afraid to take Nolan in the wind. But the view from the house is great. It is so peaceful listening to the waves roll in and the wind howl. We will head back to Durham late this afternoon. There is a forecast of lots of rain and some flooding so I decided to get back to our apartment before we get stuck four hours away
Yesterday Nolan had to go through all the blood work again, 6 or 7 tubes. He did great compared to last time. They only had to stick him once and he did not squirm too much, and mommy did not cry this time. Wow! That was all we had scheduled yesterday. We do have more blood work on Monday when we go in for Pre-op.
I have been taking some extra time just to hold Nolan tight. I find myself with tears in my eyes most of the time. All this waiting has given me plenty of time to think and read lots of other websites. There are so many kids fighting for their lives. I still can not believe we are one of them, Nolan looks so normal. Someone asked me doesn’t it just seem unreal, yes it does seem unreal, like I am living someone else’s life someone else’s nightmare. I try not to look too far ahead because the road seems so long.
Cooper , Mackenzie and Sam are coming next Thursday, I can not wait to see my babies!!! They are snowed in at the moment. Denver area is having the worst blizzard in 20 years, and I am missing it. Ya’ll save me some snow!!!! I loved the pictures Boyd, thank you.
Well that is it for today.
Love, Nancy and Nolan
“Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things” Philippians 4:8
Saturday, March 15, 2003 7:50 PM CST 10 days until count down.
It’s Saturday evening and Nolan and I are enjoying a viewing of Gone with the Wind. He really likes it; I think it is the music. He must take after me. We saw Dr. K. yesterday and she thinks Nolan looks good. We met just to touch base before the weekend. We only have labs on Tuesday of next week and then we are free the rest of the week (I think). My friend Suzi has invited us to spend some time at the shore; a friend of hers from her Bible study has a house about 4 hours from here. So Tuesday after our lab work I think we are going to drive down for a couple of days. It will be nice to get out of the apartment. Plus in 10 days I will be confined to the lovely accommodations of Duke Hospitals PBMTU (Pediatric Bone Marrow Transplant Unit). So we are going while we can.
I think the hardest part so far has been the waiting. I can not think of a time when I have been so alone. I really appreciate everyone praying for me, it has truly helped. When I start feeling sorry for myself or depressed I just think of all the other Hurler parents who have lost their babies. Reese still weighs heavy on my heart. I think about Doug and Shawn daily and the struggle they face of life without that sweet child. I have started a bible study it is Max Lucado’s Experiencing the Heart of Jesus. It seems very applicable to me at this very moment. Isn’t God so good to have it come out at the book store just at this time. Just for me! He has shown me many things that he does just for me. I am also reading a book called Holding on to Hope by Nancy Guthrie, someone e-mailed me about this book I just can’t remember who, but I saw it the other day at the book store and remembered someone said to read it. It is about a mothers struggle with the lose of a child with a metabolic disorder. It seems everywhere I turn he talks to me. He has been using songs from my CDs and such to really comfort me. A different song almost everyday, he knows just the thing I need to hear. One in particular is Jesus Lover of my Soul (It’s all about you). I am also reminded often about He Knows my Name (Kevin someday we are going to do that in Praise team, right?). These are just two great songs that constantly reminded me of who God is. Hey Got Grace girls, I have been shaking the rafters with that Boundless Love CD I miss ya’ll beyond words, I think of you every time I listen to that CD. When I get back ya’ll will just have to sing all those songs over again because I just love them and can’t wait to sing them with you.
I will get Michelle to put some new pictures out as soon as I learn how to send them to her. I took some really cute ones this week of Nolan but can not figure out how to get them in a file to send!!
Love to you all
Nancy and Nolan
Wednesday, March 12, 2003 10:08 PM CST Today was a really good day for Nolan. He seemed to be much more like himself today. Happy and laughing all day. I think the surgery plus the wrong medication made him a very grumpy boy. Thank all of you who prayed for Nolan today about his eye appointment. He had a great visit. They were able to really look at his eyes. No screaming or kicking this time. The doctor determined he is very far sighted. He is being fitted for baby glasses. I can see him now pulling them off every two minuets, hopefully after the transplant his eyes will improve. They are not sure if they will but some kids have had improvement.
I met two nice ladies today at the store. The Lord has been so good to me sending messages to me through complete strangers. I shouldn’t be so amazed, that’s just who his is. One lady wants to have Nolan and me over for dinner before we check in; she actually lives just around the corner from my apartment complex. It seems as if the Lord has surrounded me with his people, everywhere I go I meet a wonderful messenger from God. I don’t think there are any non-Christians that live in North Carolina!! I understand now why we drove 28 hours to Duke rather than 10 hours to Minnesota. God has a special place here for us. Nolan is being well cared for and prayed for. I have been again restored to the fact that basically people are good.
Tomorrow we have to go back to clinic for a check on the penicillin reaction and have skeletal x-rays done. Then we are free until Tuesday. Pray for me over the weekend it will be long without any appointments. I am ready to get everything started. We have blood work on Tuesday, Pre-op on Wednesday then we meet with Dr. K again on Friday.
Well, That’s all for now!
“I sing to the Lord because he has taken care of me” Psalm 13:6
"He takes care of his people like a shepherd. He gathers them like lambs in him arms and carries them close to him. He gently leads the mothers of the lambs" Isaiah 40:11
Tuesday, March 11, 2003 9:46 PM CST Today Nolan had a reaction to the antibiotic he was on for his ears and throat. He broke out in a red bull’s-eye like spots and his hands and feet swelled. He looked really miserable but I think he felt ok, until this evening. He was real fussy after he took all his new meds. I had to take him in to clinic this morning and 4 hours later we left with the diagnosis he is allergic to penicillin. They replaced his Augmentin with Azithromycin, Prednisolone, Ibuprofen, and Benadryl. Nice! Nolan hates oral medication. So I ended up wearing most of it. Boy has he got a rude awakening coming. I am sure the nurses on the unit won’t have the same problems I have. This does not set us back any at this point. We do have to go back in for a check on Thursday. I hope this clears up really fast. Also pray for me as I have to give Nolan his medication twice a day with two of them and every 4to 6 with the other two. They really don’t taste that bad if he would just give it a chance. He gets so worked up about it before we really get started. But I guess you can not use that kind of reasoning with a 10 ½ month old.
Thank you all that have been signing in on the guestbook, the entries have meant so much, I also appreciate the e-mails of encouragement. We have only just begun our journey and have miles to go I need to keep a fresh attitude. It is always encouraging to sign on and read all of your wonder prayers and thoughts.
We have a new development on the home front. A nice lady from Dallas (a friend of a friend) has driven up to Colorado to give Sam a hand with the kids. Her name is Marybeth; she felt that God was leading her to help us out. Praise the Lord for working out all the details. If this works out the kids won’t have to go to daycare, she will be like a live-in nanny. Now if only someone would be led to come be my live-in nanny!!!!!!!
Tomorrow we have an eye exam. Pray for Nolan I know he will not enjoy this visit. We saw an eye doctor in Denver before we came and it was a pretty rotten visit for him. Continue praying for Reese’s family. Pray for me to stay strong in the Lord leaning on him to get me through the rough spots (by the way there seems to be a lot of rough spots). Also just pray for me not to be so lonely. I miss Sam and the kids and my home so much already that I can not imagine how I will feel in July. Well that’s it for tonight.
Love, Nancy and Nolan
Monday, March 10, 2003 6:24 PM CST Today my heart is heavy, Reese Coble earned his angel wings this afternoon. My heart aches for Shawn and Doug. Please pray continually for them today.
Nolan will not have surgery tomorrow, they think it is too soon after last weeks surgery since he had to go to PICU. We will wait until March 25th , have surgery for the central line re-do the spinal tap and then go directly into the unit to start Chemo the next morning. I am very apprehensive about the whole process, it seems every Hurler kid I read about on the internet has died or is having a really hard time. I pray the Lord will give me a peace about the transplant, I do understand that this is the only treatment available to Nolan at this time that is proven useful. I am weary already just being here where real life does not go on. Everyone I meet has a very sick child. I have stepped into another world where there is sickness and pain and lots of tears. Don’t take this the wrong way I have met some really awesome Christian people here. I just pray that I can be as strong when my baby is miserable and in pain. It seems so wrong to make my happy, fun loving baby so sick. I look to the next weeks with dread and I focus my eyes on heaven because I can not bear the things that Nolan will face. It all just seems too close as I sit here praying for baby Reese’s family.
Today is Sam and my anniversary we have been married 13 years. Happy Anniversary Sweetie I miss you. I thank God everyday for such a wonderful husband. Today is Sam’s first day back with Cooper and Kenzie. He is the single Dad. The kids both will go to Daycare today, pray for them as they adjust to this new schedule.
There are a couple of things going for Nolan around town (in Colorado). On March 15th there will be a mass held at St. Scholastica Catholic Church at 3:00 pm anyone is welcome. Also our home church Mountian View Southern Baptist will be fasting on March 17th and 18th for Nolan everyone who can is asked to join in (wherever you are). I wish I could be there to be apart of all this. I miss ya’ll so much.
Nolan and I have two weeks with very little scheduled. So we will be just hanging out in Durham waiting. Anyone want a nice vacation to North Carolina??? We could use the company. Anyway, That is all for now, just remember to lift up Reese’s family tonight I can not begin to know what they are feeling.
“God is our refuge and strength, always ready to help in times of trouble.” Psalm 46:1
Friday, March 7, 2003 8:34 PM CST Well another day has passed and we are still here! (By the way this is Sam) We did not have any visits at the hospital today so we just sat around and relaxed. It was really cold here today, that is for North Carolina standards.
We had a real blessing today. A friend of my cousins that Nancy has been corresponding with by email drove a really long way to come visit us. We had a great time sitting around talking with Suzie for several hours and then went to dinner. Also her Bible Study group had put together a care package of videos, books and stuffed animals for Nolan. The spirit of Christ is certainly alive all around us. It may sound funny but I am beginning to understand Jesus better through what I am seeing in the actions of others. I can never express the gratitude and thanks to what people have been doing for us but I truly pray that God blesses each and every one of you. The people that God has put in our path are amazing. God forgive me if ever I lacked faith that he would take care of us. He not only walks with us but also carries us and throws over his shoulder in these situations!
I am planning to go back to Colorado on Sunday. I am kind of torn, as I am really excited about seeing Cooper and Mackenzie but do not want to leave Nancy and Nolan. I just have faith that this is going to work out. I know that there are reasons for this that I cannot understand and frankly I do not have too! Nancy will go on Monday to sign the consent forms, then Nolan will have his central lines installed in surgery on Tuesday. The remainder of next week I will be in Orthopedics and Ophthalmology. If all goes well Nolan and Nancy will check into the Transplant Unit on March 17th and Chemotherapy will start on the 18th. Please keep us all in your prayers. I will be planning to come back in late March.
To close I wanted to share a scripture that I have been clinging too for many years. It really helps me through the storms in my life. One thing that is hard for me because of my organized, engineering, thought process mind is I want to understand everything! I do not need to understand everything. I only need to have faith that someone much greater than I does!
“To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weakness, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong”
Wednesday, March 5, 2003 5:24 PM CST Hello everyone,
Sorry we did not update yesterday. We had a pretty busy day, the surgery went well. They tested his hearing in the OR and he has normal hearing. Praise God. We had been told early last week that he had considerable lose. They just don’t know the doctor I know!!!!! Everything else went well, we did not get the results of the spinal tap they did, but hope to know something later this week., we did have to spend the night in the PICU because of oxygen levels. We went back on 100 % oxygen this morning about 3am so now we have to spend one more night here. They did move us out of PICU to a regular room. So we wait until tomorrow. Nolan is doing great, he is in mild pain but they keep him on Tylenol all the time. Well as I am typing Nolan keeps dropping his STATs, not good if they put him back on O2 we spend another night!!! Pray that he will not have to go back on O2.
I have a special request from Reeses family, they are asking everyone to pray tonight at 7 pm eastern please log on his website and they have a prayer that they are asking everyone to pray. His website is www.caringbridge.org./nc/reesecup/ . We met his family last night while we were in PICU, I feel like I know them all and they were so warm and welcomed me like family. My heart breaks and aches for them when I read their daily journal. Thanks for remembering them when you pray for Nolan. Sorry to post so late I hope many of you will pray this prayer even if you get this later than 7 pm.
We are so moved by the response to the website and love reading the entries. We are working to add new pictures to the site and more information with links.
Love, The Ramseys
Monday, March 3, 2003 8:30 PM CST Nolan just took his first crawl he moved about 3 inches. Yeah Nolan!!!!
Thanks for all the sweet messages we are so moved when we read them. We love ya'll!
Today we met with Dr. Kurtzberg to discuss the next couple of weeks. Having his tonsils out only set us back one week. So we are scheduled to get our central line next Tuesday on the 11th, then we check in the unit to start Chemo on Monday the 17th or Tuesday the 18th. Nolan should get his transplant on the 28th.
Dr. K discussed all the things that could happen with all the different drugs he will be taking. It is very scary to think about, but they have to tell you the worst case. Our chances are as good as they get. The donor cord is a 6 of 6 match with lots of cells, this is great!!! Praise the Lord! Nolan actually had three perfect matches, Dr. K picked the one with the highest cell count it also comes from a female donor, this will make it easier to tell which cells are the donors and which are Nolan's old cells. No he will not have any girly characteristics (we asked!) but his blood type will change from a+ to B+ and his blood will always look like a females, but it will not effect anything!!!
Please add to your prayer list a little boy named Reese, he is another little boy with hurlers here and is very sick right now. I know his family would welcome the prayers.
Reality is setting in about what really lies ahead. I am nervous about all that Nolan will have to endure. I am thankful he is too young to remember any of it. Pray for my strength and peace.
"Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fire, you will not be burned, the flames will not set you ablaze. For I am the Lord your God, the Holy One of Isreal, your Savior." Isaiah 43: 1-3
Pray for us tomorrow for fast recovery from the tonsils.
Love to all - Sam, Nancy and Nolan
Thursday, February 27, 2003 8:52 PM CST Our first week here is almost complete. It has been very busy and very exhausting. Nolan is doing well with all the Doctors and test he is a real trooper. Nolan will have his tonsils out on Tuesday then we will have to wait about a week to 10 days before he will get to start his chemo conditioning. We appreciate all the prayers that are being prayed for us. The Lord is working so much out that I shouldn't have a thing to worry about but Nolan. We have met many people here that I believe have been placed in our path in answer to prayers about help for me while I am here alone. We met two women today in clinic who have offered assistance when I am here alone. Praise the Lord for the little things and the big things. We rented an apartment today so we will get out of the hotel on Tuesday. It will be nice to be able to cook some food instead of eating out all the time. Thats all for now I will update address and phone numbers when I have them.
Love - Sam, Nancy and Nolan
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