5/2/07
Mark and I are recovering, finally, from being sick and miserable. Samuel just recovered from a GI blockage that resulted in us ALL being up all night with him miserable. Apparently, we allowed him too many food combinations which were possible blockage problems in the same day. Actually, I think it happened over two days, possibly not a huge deal the first day, but compounded with other foods the second. Nighttime is NOT the time to try to flush something out either unless you don't care if you sleep. I gave him some Neurontin and waited to see if it did it's usual thing: knock him out. Not so lucky. As I was sitting with him, I noticed his gut was really loud and with each painful sounding rumble, his legs twitched. He never settled down. So, I debated over whether to give him his digestive enzymes which usually dissolve blockages. I decided to do it thinking they might settle his tummy and break up the blockage while he slept. No such luck so about every 30 minutes he was up crying because either he pooped, peed or his butt hurt. At 4am, I gave him a long hot bath after basically being up from 12-4am and he made it until 6am. Then slept in until about 9am. We spent the morning working the food out and by noon, he was back in bed for a long four hour hap and woke up fine after that. While it totally sucked, it was nice to have relief in a day rather than months of this cycle. Today, he has been eating again albeit more slowly and cautiously than the pigging out that has taken place here in the last few days.
Just as he plays hardcore outside, suddenly he realized that his mouth has not eaten enough food in the last few years so he has a lot of making up to do. Hence, if the food is extra tasty to him, he gobbles it thinking someone might take it away before he has had his fill. It is a hard line to walk when you think of how much time he has spent not eating, not wanting to eat or not being able to eat. Last year, all we wanted was for him to be able to eat and poop. Now he can do both so get out of the way. We often offer him a new food to try and then pretend to ignore him while he eats because if we make too big a deal out of how great it is that he tried this new food, he will often stop eating. Or he will take the first bite, say he likes it and then not want anymore. So we look at each other and sneak looks from the corner of our eyes until we are certain he is going to eat.
This week he has tried strawberries, just today in fact. And he likes them! Add a new fruit to his list. That and bananas. He said he liked apples, but now won't eat them anymore. He tried celery today and liked it but did not like how watery it was. Apparently it squirted him. He will take an occasional bite of raw carrots and broccoli and says he likes them, but won't ask for them. His latest food craze is for hard boiled eggs. In fact, all the kids think they are great so that is pretty cool! He also ate homemade hamburgers this week and loved them. And I can get all kinds of good stuff packed into these burgers like oats, onions, and garlic chives so I was pretty impressed when he ate a whole one without picking it apart and then asked for another. We have been working on a snack list of healthy things since everyone around here seems to be starving and that is going well. We have also been working on a meal list that comprises foods that everyone will eat. I think I can honestly say that Samuel now eats better than Daniel does. I am really thrilled about the food situation around here if you cannot tell. It is so nice to have kids who eat.
We started a mini garden back in January from seed and now have tomatoes, green peppers, onions, hot peppers, and tons of herbs to eat. It has been really cool to watch these things grow and then eat them. We are going to start a root garden outside soon as well. Honestly, I think I need chickens for eggs and a banana tree for Samuel just to cut down on food costs for him currently.
We spent some time yesterday cleaning up the front yard. For the first time in three years, you can see our flower bed. All the kids helped and it was actually fun. I remember doing yard work with my parents and it definitely was NOT fun. Our kids had fun and that makes me happy.
Mark has not had any job offers. We think it might be best for him to find temp work for the time being so we shall see how that goes. He has a few prospects but nothing significant. With the cost of gas currently, in some instances, it might cost more to work, than not work and if that is the case, we will have to figure something else out. Just depends on the wage and distance from here.
Interesting things to note. While Mark and I have obviously had some bug, none of the kids got it. Kaysha might have had a touch, but Daniel never seemed to. Samuel and Anna have been perfectly fine as well.
We did not get away last weekend as I had hoped but are planning a day trip for this weekend if the weather holds. I don't feel so cooped up here since we got the front porch cleaned off and can actually have afternoon coffee on the deck which we just potted all our herbs onto.
I am so thankful for the good days. Praise God for these gifts.
4/28/07
In the last week, it has been like someone flipped a switch ON in our lives. I really wanted to enjoy it more, but I ended up getting sick instead. It started just before Samuel's birthday and seems to be fading now. I really hate head colds and have no clue where or how I got this. Herbs have kept the worst of it away but my head has been in a fog the last few days. Mark got a touch of it a few days back which made matters worse since we usually don't get sick together. Life is more difficult when we both feel worthless.
In the last week both Samuel and Anna are completely OUT of diapers. No nighttime diapers at all now. Both decided to use the pot and wear underwear to bed and both have done just great. Now you want to talk about a gift, THAT is a gift. How long have I waited to say that we are officially done with diapers. Well, I know that Samuel may still have the occasional need for a diaper depending on how his gut may be doing, but for the most part, he gets it and he can control it.
In the last week, both he and Anna figured out how to pump on the swings so that is pretty much all they do all day. If not that, then they are digging in the dirt. But mainly they swing and don't need help, or want help. Funny, two things they both got in the last week. Hey, I will take it. Growing up, independence is GOOD in my book. I still have to drag Samuel in exhausted kicking and screaming each night because he simply hasn't played outside long enough yet. Nevermind that he has had 12 hours out there. He has a ton of making up to do still.
Samuel has just been doing great. In the last week, food is NO longer the enemy for him. He can eat and he wants to eat. Best of all, he is trying new things. This is another HUGE thing. Previously, he would smell things and think they smelled good but refuse to try them. But now, he is all about sitting up and eating with us and for the most part, he is finding a lot of new "good" foods he likes. He will ask, "Do you think my butt will like this food?" Yes, he is getting the other end of things as well. Thankfully, we have had really good results with foods. And what that means for me now is that we have to try even harder to offer more healthy foods for him to eat. More organic foods will reach our table than ever before because I don't want his chemical load to be any higher than it needs to be. A g-tube formula is easy to make and feed because I know that every item is healthy, organic, fresh and homemade. It is prepared properly. Sometimes we, as a family, lack in this area because of either finances or time so that is something that will have to change now and even more time and effort will need to be spent making foods properly and from scratch. Samuel eating is a really good thing! We have waited three years for him to actually want to eat with us, and now he does. It is so impressive and just more signs on the way to restoration.
Mark has spent some time looking for a job this week and that has left us all with very mixed emotions. He actually found a job and applied for it that seems just perfect for him. And I will be happy to se him go to work, somewhere. I will. I am tired. It has been a long three years and I have found, especially this week, that I am tired of doing what I have had to do the last few years to keep us going financially. I just want to be a mom. I just want to be a teacher. I want to cook and clean and do school with the kids and take some time off from everything else that interferes with this. I want to see the kids have fun, not worry about Samuel and doctors and when the next hospital visit is. I want them to be able to make new friends and do activities that they have missed because of this. I want us to be able to go to church, as a family again. I want to live a little. Mark and I need to find ourselves again. I have no hobbies these days, there just isn't time for that. I have done so much working, researching, full time nursing to Samuel, etc. etc. etc. I am tired. Now that things are becoming more "normal" I want a break to just do what every other mom of four does. I want to enjoy some things rather than live with my mind going 60 miles a minute multitasking every little thing that has to get done or Samuel suffers, we all suffer. Life is busy enough with four kids and doing just that is a full time job. Adding all this other for the past few years, well, I am tired. This has taken a lot out of me. Mark and I have both joked that we have probably cut ten years off our lives simply from the stress of the last three years. Life just doesn't give a person much chance to catch their breath in an ordeal such as this. It is sad that we cannot, as a family, take a month of carefree vacation right now.
Yet, Mark working full time means we are stranded at home. I was stranded at home three years ago, but the kids were three years younger. There wasn't as many fun things they wanted to do. So, it will be an adjustment for sure. I am leery about Mark finding a great job and then having something come up with Samuel that causes him to lose a good job. Do you know that Mark had applied for a job with a local school district just before Samuel's diagnosis? And they called him to offer him the job right after Samuel's diagnosis. It was a GOOD job. It would have been just perfect for Mark and for us. I pray that Mark find the right job fur us while we find our way in the world. I don't know what the next months have to offer us but I do know that we need to tread lightly because Samuel will have some other issues we will need to deal with. I pray that Mark find an employer who will understand our situation and that time off for these things will not be a make it or break it thing. I worry a bit about Mark working and at the same time, I know we cannot go on much longer the way things are right now either. God holds us in His hands, even in the most precarious of situations. I know God has a plan for Mark and pray that it come to pass SOON. God knows what we need even if I don't. That is a very good thing.
Some disturbing news this week. I sent an e-mail to our Social Worker in Tacoma, Mary, who let me know that as soon as her house sells here, she is moving to Montana. This is SAD news to me. Mary is possibly one of the only people who has been with us since this all began. She is one in a small handful who actually care about Samuel and us. Everyone else does their jobs, she cares. So, I was pretty sad to get this news. We would not have went back to Tacoma if Mary hadn't been there and I am really not seeing the need to continue to go there for a whole lot longer after she leaves. Perhaps time will change my mind, but attachments like that don't just vanish overnight. When I told her that Samuel was doing great and finally, now some three years later, he HAS a quality of life, she sent me this.
"I am so pleased/thankful to read that Samuel has better quality of life, and I hope you and Mark realize and hold onto the fact that it is because of your strength, perseverance, love and tenacity that he has any life at all. I greatly admire you as a mother and person, holding your family together, going without sleep, researching, advocating, never giving up (hey you should be a social worker!) Please take a moment each day to allow yourself to bask in the fact that you saved your child's life and have given him the quality of life he now has. "
Basking in this note for a moment......it is nice that God does not require doctors to perform miracles, just faithful servants. I cannot say I am all that faithful a servant at times, but when it comes to my kids, I will do whatever God says.....period. At any rate, this note was a nice gift.
Other Samuel news to note. I e-mailed our former Onc in Seattle just after Samuel's birthday with a current pic and let him know that Samuel was FINALLY doing well. He was impressed. He writes, "Wow." I am certain he thinks some doctor is to thank for this miracle. Well, we praise the Lord!
I realized that Samuel's port is about 17 months old now. We had the last one replaced right around 19 months because it quit. Mark and I talked a bit about this knowing that it's useful life is probably drawing to an end. We will not replace it. There is already scar tissue there, enough that they had issue placing this one, and then add the shunt. NO, this is it. So I hope it lasts longer than the last one did. When the port dies, I think any further Oncology things will die as well. Labs don't change anything at this point and as long as Samuel's GI improves daily, seeing the numbers is not necessary. I can look at his face and see how he acts and know all I need to. We will need to address the shunt sooner than later keeping this in mind. Mark says he is not ready. Yeah, none of us are ready. The only surgery we want to consider shunt wise is removal. And that is just a whole other ball game. So while this is still on the back burner for now, we really will need to address it soon. Mark getting a job makes dealing with this tricky as well. By the end of the year, it would be great if Samuel had no shunt and no port. That would be perfect and two less medical things to keep us tied to hospitals. I think Samuel would not be terribly sad to not have a shunt or port, but I think he would be incredibly sad to not have his tummy tube. That is staying indefinitely and thankfully, it has been perfect.
I realize today, that I have felt like crap for the past week and no one has had much fun. Kaysha and Daniel took their SAT's this last week. Poor Daniel did not enjoy getting dropped off in a strange place. He said, "that creeped me out." Mark said he looked like a "little boy" when he went to pick him up on the first day. Both kids say they did well. We shall see in a month when results are back. In Daniel's case, I can say with sincerity that I taught him everything he knows. If he doesn't know it, I am the reason why. I am excited to see how they did and I know they will be as well. So back to the "fun" aspect. I hope we will be able to take a family day trip in the next day or two. I am really feeling sour toward my house being stuck here for so many days now. The "babies" do fine in the small back yard. The big kids, however, are bored easily and find they have nothing to do. Getting away for a day will be a much needed break for us all. Much love.
4/21/07
Happy Birthday, Samuel! Each day with you is a gift and I cherish every moment that you find joy. I pray that your fifth year of life be your best to date and that you know only joy, happiness and restoration. May the Lord guide our paths to continue to take care of you as He restores all parts of your earthly body. Yes, baby, Jesus is in your heart. He takes care of you and He will never leave you. He is healing you. I pray He use you and your miracle to draw others to Him. You will always be my very special gift from God. I love you more than I could ever show in hugs, kisses and gifts.
4/20/07
Biopsy Update.
Our GI's RN just called to LMK she spoke with our GI further about the biopsy results. I had the report read to me verbatim and it does show significant improvement! Our GI is extremely pleased. The Eosinophils which were present previously in moderate amounts are only present in mild amounts. The neutrophils are gone. Previously they were mild to moderate as well. This is great news. Our GI does not recommend antibiotic treatment monthly........which is good because we would not go for it anyway with the improvement we have been seeing daily. I am extremely thankful to have found this GI and this office staff who have treated us so kindly and compassionately. I told the RN this very thing today. What a great anniversary gift!
We don't have a return appt with the GI until June 8 and the dilation is still set for mid May. Time away from doctors is SUCH A GIFT! Praise God.
4/19/07
Samuel is doing really well!
This has been a really awful week for our country and with the presence of so many catastrophes and anniversaries of catastrophes, including ours, it has been difficult to do much of anything but watch and pray for others. Our prayers are with the families of Virginia Tech. Watching this unfold has been sickening and very tragic.
5 years ago, this was a blissful week for us. We were waiting for Samuel to be born and everyone was excited. I remember thinking he would be born on our wedding anniversary and then he waited for the day after. My MW, Toni, said he just wanted his own day. Four years ago, Samuel's first birthday. He was such a precious gift to me and I considered that year to be possibly one of the best in my life on this earth. Three years ago, today was the last day of naivety. Three years ago tomorrow, Samuel's leukemia diagnosis. Three years ago, I spent my first night in the ICU with people telling me Samuel would possibly not live through the night. And on Samuel's birthday, his first chemo. I will never forget the many doctors, nurses and our dear social workers asking, "Is today really his birthday?" He never had a second birthday. And while things for us are improving each day, other people's worlds are shattered this week. Tends to make a person stop, and reflect on the gift each day is when life is "good." Gifts are the days not filled with turmoil, heartache and frustration. Gifts are worry free days filled with joy and hope. Gifts are the days in which your little balloon has not been popped and allowed a cruel reality to set in. Perhaps people don't really see these gifts until something happens in their lives to show them what real turmoil is. Today, is not perfect, but in this house, it is a gift.
Samuel has verbalized some fear from his past in the last weeks. One day we were telling Anna, jokingly, that if she did not learn how to eat, she was going to get a nose tube. Well, Samuel came unglued and said that we could not give Anna a nose tube because then she would not be able to talk. He was pretty adamant about it and we tried to talk it out a bit, but he is certain that a nose tube means a person cannot talk. And he is also certain he does not ever want one again. He is terrified at the thought so as I suspected the whole time, when he wasn't able to talk he was so extremely frightened. I hope he never needs a draining nose tube in the future because he will have to have it done under sedation based on the amount of fear he has and he will most likely be unreasonable about it staying put. I imagine that we will hear more and more memories and possibly fears verbalized as time passes.
I was thinking about certain habits I have gotten into since cancer and subsequently, chemo, showed up in this family. I ask Samuel, several times a day, "How's your tummy?" And his tummy hasn't bothered him in months. But it is just habit. And I feel his forehead checking for fever several times a day. Again, just habit. He hasn't had a fever in quite some time and it has been years since fever was significant. But again, there were so many months of non-stop fever and suffering that I guess you just don't get over it quickly. I don't ask the other kids how their tummies are and I don't check them several times a day for fever. I don't expect either of these to show up in Samuel either, it is just a strange habit now.
I did finally, just a few days ago, erase my board. The one where all the names and numbers for Medicaid, OHSU, and attorneys was. It has been insignificant since last year but I just could not get rid of it until now. Mainly, I needed a dry erase board for the kids's school, else it would probably be unerased. I guess it takes awhile to shed all the layers of the past. There seem to be a lot of layers to deal with shedding. A lot has happened and much of it has been stored away in the back of my mind because of Samuel's daily issues which require so much more of my thought time than analyzing the past. Anniversaries, however, are always a time for reminiscing and analyzing and I have taken a small walk down memory lane this week. Each year I have looked back and reflected on different aspects of everything. Last year, it was quality of life. He pretty much had none. Last year, I got sick on his birthday. Interestingly enough, today, I feel a twinge of sickness creeping up. It is really annoying.
Tomorrow, the third anniversary of Samuel surviving chemotherapy and subsequently cancer, is the first place an oncologist sighs with some relief. If a child lives three years post diagnosis, it is a milestone. The next milestone is at the five year mark. So, tomorrow is Samuel's official milestone in the cancer world. I assume the first major milestone in everyone's eyes is the initial remission although it is a very rare thing for a newly diagnosed leukemia patient to not achieve remission with chemo these days. In my mind, milestones are counted in "gifts" of survival days, weeks, years and lifetimes until the person has accomplished what God has set forth in their lives and decides it is their time to go. Samuel has a lot of living to do as evidenced by the amount of time he has spent outside playing these last weeks. He is feeling better each day and has a lot of making up to do in the back yard it seems. He plays outside rarely taking breaks and comes in holding a grudge against whomever calls him in for the night. Nevermind that he has been out there for ten or twelve hours. Makes no difference to him. I still daily marvel at the fact that he CAN play outside. I enjoy seeing him enjoy life. It is such a new thing still.
Perhaps this "milestone" means nothing in our case. The milestone is acknowledged for children who are following the protocols. Obviously Samuel isn't. So either our milestone is more significant, or it is not significant at all. More significant due to the little amount of chemo Samuel received, or less significant because there is nothing to compare him to. In looking at chemotherapy evolution for leukemia, there is nowhere Samuel fits into the models. Early chemo basically used two to three drugs, got the child into remission and them treatment stopped. Usually, this was about 30 days long, similar to Samuel's induction. The median survival for this treatment was 6 months with all children dying at the 13 month point or thereabouts. Samuel received several extra drugs for his induction treatment. He also received the highest possible dosing of these drugs. Then, we took six months off to undo all the damage. After getting his body restored and his mind restored, we had several more sporadic months of chemo. Also with some new agents not available 30 years ago when survival rates were 10-15% making it 2-3 years post diagnosis. Let's not forget the unbelievable amount of surgeries, life threatening complications and adversity Samuel faced very early on. All of these things and the treatment delays, should have allowed leukemia to come back with a vengeance. The general consensus is to hit ALL fast and hard. Breaks in treatment are BAD. Originally, Samuel was given a 70% chance of survival, meaning he would live five years post diagnosis. Once the initial month took it's toll, no one was quoting stats at all. Our current Onc did not think Samuel would be with us today. I am certain our former Onc thinks he is dead by now as he knows Samuel is not on treatment now.
Is this a milestone, or just another miracle from God? I will just call it another gift from God. No doctor can explain Samuel and we don't need them to. We look to God for our answers, our cures, our miracles and our Restoration. We walked away from unanimous advice to continue chemo and I would do it again. There is nothing in the cancer lifestyle that is from God. Not the medicine, not the fear, not the lives lost, not the stealing of family well being. Nothing. We are still trying to rebuild our lives and recover from the multitude of devastations we have survived. We made the decision very early on to not be ruled by fear when Samuel started having complications no one had claimed to hear of. How many times did they tell us we HAD to continue chemo of he would relapse? I cannot even count them. How many times would he have died if we had listened to the fear they obviously had and shared with us? Too many to think about. Samuel is still alive and our lives are not ruled by fear. Satan stops having fun when you stop being ruled by fear and making decision based on fear. He will find another victim. We just refuse to be victims of cancer.
Life in the cancer world just seems to be like a cruel game where you are subjected to the luck of the draw. Well, we refuse to play. I can remember the day when our Oncologists feared Samuel had relapsed in the CNS. They told us that if this had happened, he would need even more chemo, which basically meant a bone marrow transplant with radiation. We sat in a room while Samuel was in surgery for the hydrocephalus and deemed that if it was a relapse, we would refuse treatment. It wasn't worth the misery and suffering he had gone through already. He had no life, no control, no joy, no freedom, no voice and no bodily functions he could control. We could not even take him home in the condition he was in. He was in the ICU for months. Nights were frightening there because everything bad always happened at night. He had already suffered the loss of his colon, and numerous lifethreatening complications that truly, he should have died from. And that was only day 50 of the protocol. To go through chemo, a person must be physically strong, not broken down in every aspect. Samuel was at that point, broken, in every way. I think that was a turning point for Mark and I as far as how we approached doctors and chemo from then on. As if making that decision then somehow freed us from the fear that strikes every cancer family. It was the most hideous hour we spent together talking out every possibility. I think I shed more tears on that day than I have ever cried. Thankfully, it wasn't a relapse and we did not have to go through that. But we gave him to God on that day even though the major decision to stop chemo did not come until much later. That day was our mustard seed of faith that God was in control and He allowed it to grow in us to the point where we KNEW without a doubt that He would take care of Samuel and were able to stop treatment While on treatment, so many things just felt wrong. And when we were off treatment due to surgical issues, things felt right. I was never afraid of relapse. I feared it more while Samuel was ON chemo.
Cancer is NOT bigger than God. Doctors are NOT bigger than God. We are not bigger than God. I choose to surrender all Samuel's needs to God. I give all the praise for this milestone to God. His medicine is life. It is so much easier giving Samuel nourishment, and herbs and plants that come from God in their purest form than it was to stand by and watch the poisoning. I know God was always there with us at that time, but I also realized how foolish it was to pray for God's protection while allowing our child to be poisoned and knowingly ruining his body. Knowingly ruining his immune system, knowingly ruining his organs. None of this lines up with the God I know and the life He wants us to lead. He wants us to be healed and live abundant lives. He wants us to love and help others come to know Him. We cannot do that if we are sick and afflicted. I rebuke that. It is my hope that one day Samuel's miracles will make a difference in the way all cancer is treated. I hope that people will come to the realization that chemotherapy is inhumane and demand more research on a cancer approach that treats the whole person, not just the cancer cells. More research on cancer prevention. I don't want to see anyone get cancer. I will never forget the Oncology Resident who told me that Oncology wanted to be involved in every surgical aspect of Samuel's care because they were the only ones who treated him as a whole person. What a joke! I was infuriated and told her to get out and that none of them should come back to my room. Perhaps there are Oncologists that care about something more than keeping kids on a protocol to further the research of their hospital, but at that time, the one on call wasn't. Perhaps our current Onc is like this but we will never know since chemo is not an option.
Today, I am thankful to be where we are. Would not go back for anything. Life is a gift. I will thank God for each day I receive His gifts. Mark and I will celebrate 11 years of marriage tomorrow and I couldn't be happier. One of God's gifts is us to eachother. I am married to my best friend on this earth and I am so thankful. I do wish our anniversary was on a different less horrifically historical day however. I wish Samuel's birthday was not so sadly significant. But maybe one day we will look back and feel a different significance of these days. Hopefully, the beginning of a situation in which God used for His Glory. Certainly, this whole thing has changed us forever. My gifts from God are all around me and I will savor these next two days in some small way looking to the future with hope and evidence of Restoration.
As we move forward, it is time for Mark to find a job. Can I ask you to pray that he find work quickly with an employer who will understand our situation and needs? This will be a hard adjustment for the kids to see their dad leave to work outside the home, but one which needs to happen soon so that we may finish the house and move. We took a second on our home last summer thinking we would be able to finish the repairs and move soon thereafter but instead we did what we could with the house and then lived on the equity while trying to get Samuel the help he needed. Had we not taken the second, we would have lost everything. Mark getting a job means Samuel is a lot better and we are stepping out in faith in a big way by doing this. It would have been impossible for Mark to keep a job with the erratic schedule of appointments last year. It would be so much easier if I could drive........and see good.......yeah.
I spoke with the RN from the GI clinic who gave the results from Samuel's biopsies. They don't seem to have changed much, possibly slightly better but I don't and won't know for certain until I talk to the GI myself. Whatever, Samuel is getting better daily and I am thinking what we are seeing is insignificant at this point. I have done some research into homeopathy to see if there is any remedy for scar tissue and found a few that supposedly dissolve it. So we are trying that for now because there doesn't seem to be anything else to do but wait for it to close up. I really do not want to spend the next year going to Seattle every month to have his anus dilated wondering if it will ever stop. Samuel is just not going to be able to handle that much anesthesia and after this last bout, we are not interested in it either. He needs a break from all of this. This vicious cycle needs to stop. So if homeopathy helps, great, we will be thrilled. And if not, we will keep looking for ways to stop this so Samuel's GI can continue to adapt without these issues holding up his healing and restoration.
We do not have a visit planned with the Onc anytime soon. I was advised by the RN from Gi that Samuel's next dilation would be May 15 or 22. Whichever our GI is there for. She was going to talk to the GI tomorrow to see when she wants us to return for follow-up in clinic.
Kaysha and Daniel have spent the month preparing for SAT's. Daniel will be taking this for the first time this year. They test next Thursday and Friday so we have done lots of cramming and drilling this month to clean up some of the skills that needed it. Ah, so many reasons I love homeschooling. I will be excited to see how they test out this year. Kaysha scored really high in every subject and in her appropriate grade for math. She has been behind in math a long time and finally caught up score wise last year. This year, she has really taken hold of math concepts and I am going to be looking forward to see how it tests out. Kaysha tested low in listening skills and that was no surprise to anyone! Why listen when you know everything? Daniel is quite the mathematician so teaching him is easy. Kaysha has been doing kindergarten with the babies daily and Samuel is really enjoying it. It is pretty darn cute! She would make a great preschool teacher IMO.
I gave Samuel his birthday presents today. Why wait? No time like the present. I guess him missing his birthday once makes early gift giving okay. Kaysha drew him a large picture for his room and it is full of dino stickers. We are going to frame it and he will adore it. He is getting excited about his birthday cake. He has been eating with us more often. Two years ago he only ate chips and crackers. Ode to real food! His GI is getting better and he is actually eating food and trying new things. His newest love is bean and cheese quesadillas. I have enjoyed making tortillas from scratch and refried beans from scratch. I can sneak sea weed, garlic and onions in there and he eats it like he has never eaten in his life! I just LOVE that. Life is good. Samuel eating good food and enjoying it is a gift. The "eat now, pay later" cycle seems to be breaking. That is a true gift if you get what "pay later" means.
Thank you to Kerri in VA, and Samuel's special Angel Sandi for the birthday gifts which arrived this week. No, he hasn't opened them yet... But he was thrilled to see them arrive and even more thrilled to see them come was Anna. Go figure! Thank you so much for thinking of Samuel and caring for our family.
Off to enjoy my gifts! Much love.
4/10/07
The day went well if you do not count getting up at 3am and almost getting T-boned by an "Old Grampie" as Daniel would say who ran a red light. Yes, my adrenals work just fine. Did not need that extra rush. Traffic was actually decent at the early hour in which we left which doesn't surprise me since I know not who on earth would want to be up at that time. Coming home was also nice and a special thank you to Casa D's Taqueria in Bellevue for the preferential treatment this morning. A handful of places we have patroned on our Seattle trips now recognize Mark and send special goodies for Samuel AND us which is not necessary but still VERY nice. Certainly things are better than they have been previously, but it is nice when people obviously more fortunate than us realize their own blessings and bless us with favor and kindness.
Samuel charmed everyone in pre-op again. We had a new to us, anesthesiologist who was so impressed with Samuel that she remarked later that he was so special. He went skipping off with her to his procedure and was talking and so happy that I saw many RN's stop what they were doing to watch and listen. Everyone remarked at how good he looks. Having the port accessed beforehand was super. Last night, it did not draw blood though so we were concerned about that but this morning it drew great so that was a bonus. I warned everyone that Samuel wakes up badly from anesthesia and by that I mean loud, rude and violent. I don't think they believed me seeing him initially happy and cute though. When our GI came to deliver the news that his anus is even smaller than a 13 again, she also told us that he got so much anesthesia that he would probably sleep awhile. I think she is super sensitive to anything hurting Samuel because she said it took a huge amount of anesthesia and finally fentanyl to make him stop moving. She said she told the anesthesiologist that she better do something to knock him out better because she could not do his procedure the way he was initially. Everytime she touched Samuel, he moved, squirmed, etc. I told her about the time last year when Samuel was receiving a sedated spinal and bone marrow aspirate. He slept through all the needles but moved and wrestled when they wanted to look at his butt. Think this is a sensitive area? The GI was not impressed at all with the anal closure though said the GI tract looked great, possibly better than previously. Biopsies were taken and I asked that she call me next week with the results rather than keep us in suspense. Now she thinks we are going to need to come in every 5 weeks for dilation.
Samuel came back livid, as expected. Everyone heard him yelling, screaming, crying, etc. I was glad I warned them so it was less embarrassing for us. Several RN's tried to bring him comfort. Seems he won many hearts this morning so many toys were sought after especially anything that even remotely looked like a dino. But it made no difference. He was just like a person on a bad trip. He hated everyone, everything, wanted something but no one brought the right thing. I hooked him up to his food immediately thinking that food would help but in all it took two hours for this "trip" to wear off. And he literally went from a horrible rude monster to the loving boy he truly is in seconds. One second he was yelling and the next he was happy. Of course it was two hours later and just seconds after Old Grampie tried to kill us. I always pray for God's protection whenever we get into the car and especially for longer trips. PTL for divine protection. That Grampie would have hit Samuel.
Once he was happy again, I showed him all his toys he received while at the hospital and it was like he was getting them for the first time. He remembered nothing. Very strange. I think that the RN's felt sorry that they could not do anything for us. At one point, the anesthesiologist came in and asked how long he had been asking for a certain thing. I looked at my watch and said, "Oh, about 45 minutes." She looked dismayed, as if she had somehow failed. We were just sitting there trying to ignore him. I even tried to cover him up with the blanket like he did to himself last time but he would not have it. The funny thing was that we asked him before he left if he was going to be a happy man when he came back and he said he would be. I later asked him why he was so mad and he doesn't remember. Well, WE remember, LOL. And so does the staff and anyone else within 20 feet of earshot.
Tonight, he has been fine though we are all tired from an early day. He did not seem to have any butt problems all day though said he made fire poop earlier today. It looked well formed to me so he might just be understandably sore. The first time the GI dilated Samuel's anus in Feb, she seemed certain that we could break the cycle of scar tissue closing with repeated dilations on a set schedule. This time, she seemed not quite as certain about things and I think she was surprised he was smaller than last time as well. More things to ponder and pray about. My hope is that as things continue to adapt, his poop will become fewer, firmer and dilate his anus the way it was meant to all along. The question then is when, how long will it take? Will we be doing this when he is 6, 7, 8? I hope not because I am afraid he is about to the end of his tolerances for anesthesia. As he gets bigger and stronger, he will be harder to control and these last few times, he would have thrown himself on the ground and cracked his skull if someone would not have been restraining him.
We are due to visit our Onc for our "two month" visit. Haven't planed that one yet though. I will probably wait until I hear about the biopsies and see if I have any other questions for the Onc first. Other than the continued anus issues, I have no real other concerns that need checking.
The weather is improving here after a bit of rainy weather again and I hope we can do another day outing to see how Samuel does. The GI did definitely thing emotions could play a huge part in Samuel's gut function so we will be observing this over the next few weeks as well.
Thanks for checking in on Samuel and for your thoughts and prayers.
4/9/07
Tonight we prepare for Samuel's next anal dilation which is bright and early tomorrow morning. I think we are leaving here at 4:30am or something like that. Yuck, did I mention I am not a morning person? Currently, I am in denial about the time, the drive, the waiting, the sitting, the just plain bluck of it all.
In the last seven days, it has become pretty obvious that Samuel's anus must be closing down again. It is noticeably smaller than it was right after the previous dilation. Right almost dead on the six week mark, just as our GI predicted, the issues began. Mainly, they are comparable to speed bumps vs. the pits of doom he used to have to go through. GI issues easily righted by either probiotics or enzymes. So thank God for that small favor. And interestingly enough, the issues have flared up on the days Samuel was most excited for. Last week at the beach for instance. The days leading up were fine, but on the day we went, he ended up with his butt hurling most of the day and taking a bath in the sea did not help. That is another story. When we came home, the whole thing was righted overnight. And lesson learned, bring morphine for daytime outings from now on. That would have solved the entire problem immediately. But we did not think we needed any. And then on Easter, we were at Mark's parents and again, his butt started hurting. Both days to the point where he could not walk or sit on it and he was afraid to poop, yet needed to go. So irritating. And upon coming home, it was all righted again. I suspect it might be nerves, excitement over doing something fun. You know he hasn't had enough fun in life yet so little things are VERY big to him. Big enough to disrupt? We shall see. Today he has been fine, but we have been home. Our last trip to Seattle seemed to disrupt his gut similarly to this. He counts trips to the hospital as fun and exciting too. Hmm. So I am thinking of using some nervine tinctures for days when we might see a flare up due to him being extra excited and see if there is improvement. I also wonder how the size of his anus and what is going on down there may be affecting these flare ups. But again, thankfully, the right themselves in a half day or less so that is a good thing compared to the months he suffered on end last year. The other thing that troubles me is that these flare ups make his butt an open raw sore and since we already know it WANTS to heal closed, how is it ever going to stay open if it is always irritated and trying to heal itself.
Our GI will do the dilation and take another set of biopsies tomorrow. We dropped the other kids off to stay with Mark's parents tonight since Anna is a horrendous monster to take on long hospital trips these days. Hey, she was never easy, believe me, but she just protests louder these days and cannot sit down for the life of us. Mark usually sits in the Backus Bus with them for hours waiting on us. I thought it would be nice for all of us if he could come in. He hasn't seen the GI since October. That will be different. I am certain she will be surprised to hear how much better life has been though it has only been about three weeks since we saw her. Mark just accessed Samuel's port so that we don't have to wait around in the morning for someone else to do this. It always seems like it is such a big deal to have this done for anesthesia procedures and we often remind people that THIS Is what we have the port for. That and Samuel does not do well with anesthesia's these days and certain ones make him so irate and uncontrollable. This is one of the reasons he was given versed back in December AFTER the surgery, because he woke up and the RN was certain she was not going to keep him in the bed, and he was violent. I need to go pack his food, snacks and medicines for the road.
Samuel is pretty high maintenance as far as keeping his GI in check goes. Last week, he had three outings. The day we went shooting was fine. It was also unplanned and he did not know what we were doing really until we got there. His gut did not flare up and we did not eat away from home. We were only gone a few hours. The outing to the beach was a two hour drive one way and we spent almost six hours on the seashore. This was planned and he knew about it. We took all of his acceptable foods, and his "formula" . He also takes enzymes, herbal vinegars and infusions which all seem to be keeping things in balance IF they are given at the right time following a meal. And he absolutely HAS to eat a banana every day or you can throw the whole thing out the window. Thankfully, this is the one fruit he will put into his mouth and eat. But most of his useful "Medicines" for acute conditions have to be refrigerated or crushed and we left them home assuming things would be fine. Easter Sunday's flare up just had no rhyme or reason and I really think we have one of two problems or a little of both....nerves and anatomy failure. It will be interesting to see how he is for his birthday party. Hmm. We have also ended up using the Neurontin on the occasions of these flare-ups and I cannot tell if it causes GI issues or not. I thought it did originally but then I gave it with probiotics to hopefully right the GI and that seemed better so from now on, we will just give both together JIC. It is nice to have it in reserve but I suspect that you cannot give ANY medicine without repercussions somewhere else in the body. Samuel's are just more evident than most.
The trip to the beach was wonderful in spite of Samuel's butt issues. Of course the kids really loved flying the kite and played the nitre time in the sand. Samuel got so tired but refused to give up and insisted we make him a bed in the sand. Once he was too tired to play with the toys, he had Daniel play with them so he could just lay and watch. His butt was hurting as the day closed and on the drive home and I was so wishing I had thrown the morphine into the cooler. We used this trip as a point of reference as to what we would need to still have along if we were to go camping overnight. So, the list of things needed now include all his refrigerated medicines and a half size Rubbermaid tub for bathing him if necessary.
We played chicken with the waves as we always do. Upon arriving to the ocean, all the kids suddenly "lost" their shoes. Then it was too hot for pants. Note that I was freezing for most of the trip. So I wasn't getting in to the water, no desire whatsoever. Well, Kaysha and Daniel got brave and did not heed the don't turn your back on the ocean warnings and Samuel watching them, also forgot to run. The tide was coming in anyway and rushed in fast and knocked Daniel off his feet to the body surfing position. With water only knee deep, I just watched him float in. But then Samuel lost his footing and ended up rolling in. He was going the right way but I knew immediately I was going in fully clothed in my good hiking boots to snatch him out of the sea. Thankfully we all brought a change of clothes and shoes. Samuel was none too happy and the fall shook both him and Daniel up a little. But upon changing clothes, they both recovered. I had handed Mark the camera to play with Samuel in the water and he was taking pictures of Anna on shore and missed the whole thing. By the time we got his attention, Samuel was screaming and being carried to dry land. Lesson learned by two kids at least. All in all, it was a fun day for us and a good way to plan for future longer trips.
I am thinking that perhaps we just won't tell Samuel about any potential fun things coming up so his gut will behave better.
We have looked at some real estate in this state and found a few places which got me feeling excited. I have caught myself daydreaming about life somewhere else. Somewhere where the kids can play outside all day in a yard which is NOT a mudhole. Somewhere where Bud can live. He turned 14 today. Somewhere where they can make forts and dig holes, have a tree house and the dogs can roam a bit. Somewhere where we can sit outside at night and enjoy God's earth. Somewhere where life is a bit more peaceful and simple. I think we all dream about this and it feels like we are on the way to it soon. I know God has big plans for us and I am excited about that. Several times a day, I feel joy for no reason feeling a foreshadowing of what is to come.
Well, I must get ready for tomorrow and go to bed, for all the good that will do. Much love.
4/8/07
This is how Samuel's update pages should look. More pictures of life lived happily than words. Life was meant to be lived and God's plan for us is Abundant Life. That means joy, health, our needs being met, family we love, looking forward with hope, and RESTORATION of any past dues and eternal life when our earthly bodies die. This year Resurrection Day to me has been a day, a week, a month perhaps of being thankful for the Restoration I have seen in our family, in our lives. The resurrection of our lives, if you will. I felt it was coming and felt like this was the month we would really see a change. Three years ago, this month, all of this nightmare began. And now three years later, rather than loathing this month, I actually look to it for blessings, and restoration of all that has been stolen from us. I believe this is our new beginning. Jesus suffered for US - for you, for my family, so we would not have to suffer the torments of life. I rebuke suffering and accept only the life that Jesus gave his to give us - ABUNDANT life. I will accept the miracles He died to give us. I will embrace each and every blessing and look forward to more.
Samuel turns five in less than two weeks. It is an anniversary and a milestone. He cannot wait for his birthday and neither can I. We will celebrate his life, his miracle and the blessings we see in every minute thing around us. Thank you Lord for your faithfulness!
3/30/07
If you are tired of reading the same old updates, you are in for a treat. Things here have been wonderful! Samuel has had 7 straight days of fantastic. Well, there was a slight blip in the road but very manageable and resolved in a few hours once the food cause was removed. Overall, life has been pretty joyous. Ask and ye shall receive wisdom. I think we have finally found the magic combo of food, herbs and enzyme back-up to give Samuel the comfort he so desperately needs. He has still been pooping 3-4 and sometimes 5 times a day but the acid issues are virtually gone and his butt is looking very nice indeed. I am just ecstatic! I feel like we have found our solution for the time being while we wait for his body to adapt more to his anatomy. Or the anatomy to grow back in Jesus name. Whichever happens first. At any rate, I have savored the last week.
We have spent the last week moving everyone's rooms again. It feels like we moved out and then moved back in. We moved Daniel, Kaysha, Anna, the sewing room, the office, and our room. Talk about musical rooms! But each kid has their own space now so Anna does not get kicked out of whatever room she is sharing. She is still getting used to her very own room. Mark made her a new custom sized bed frame and mattress, Samuel a new bed frame and will be making Kaysha a loft double bed frame soon. We did a major spring cleaning and still have more to do but it feels good to be moving right along with getting the house for sale. We have tons of stuff packed and I was actually amazed at how easy it was to move all the rooms simply because things are already packed in totes or disposed of. Each child's room makes me smile and feel happy for them. Kaysha ended up with a large desk for crafts and school things plus our older computer for games, etc. Daniel's room is nice and has an amazing amount of furniture in it for the small size. Anna's room is also very small but all her toys are out where she can play easily and keep them somewhat organized. Samuel's room remained the same other than he has a new bed frame. The last one survived Kaysha, Daniel and a few years of Samuel before it collapsed from all the jumping on it has received over the years. Mark was able to recycle most of the materials from it into each of their new beds which was just perfect. Something old, something new. Mark has the front room almost completely painted and it looks so warm and inviting now. The kitchen remains a mess and will probably be one of the last to be done simply because the sink and counter tops need to be replaced as well but won't be done until all the painting and drywall work is done. We moved our master bedroom back upstairs to the room with the walk in closet, it's original spot. This room has been everyone's room at least once, LOL but I am really liking being upstairs with the babies nearby. It has also been nice to actually start a project and finish it without being sidetracked by a screaming Pooper who just made fire poop and needs to take a bath.
Samuel decided he wanted to NOT wear diapers at night anymore since we are all upstairs now, but that did not work out so well. The first night, he peed in his pants, and pooped in the toilet. The second night, he did not make it to the toilet at all, went in his bed. The third night I told him I was tired of washing his linens daily so he was wearing a diaper. That night, he woke up and pooped and peed in the toilet. Later into the morning, he soiled his diaper. Hmm. The only rhyme or reason to this was that I learned he needs to poop at 1:30am. So he is back in diapers and probably will be for awhile. I am not concerned because I know he will figure it all out in time.
We went through some totes of clothing to make sure the kids were not missing out on wearing some of the hand me downs from Kaysha and Daniel. I found two boxes full of clothes for Anna. She is quite the clothes hound so there was lots of oohing and awing going on. I found some things for Samuel as well. Kaysha remembered a lot of her old clothes and told me the memories associated with each article. Funny what they remember. But I was so happy I saved these things for the younger kids because they evoke memories of a happier hopeful era in our lives.
I also was able to do an inventory on what the kids all have for clothing period. When my mom called to ask about my birthday, I told her to get Anna some underwear and Daniel some socks and call it done. That worked out perfectly. Kaysha made me several cards and a paper horse for my birthday and we made cookies, bread, pasta and soup. Daniel made me a card this year, his first one! The kids all asked when my party was and we explained that birthday parties are for kids. When you are older, it is not about what you get, but more about what you have. I thanked God for his gifts to me on that day, on every day. We have spent a lot of time cooking and cleaning this week as a family and while it has been "work" it has also been a fun and bonding time. I realized that Samuel had grown out of all his shoes and that all the shoes sent by Kristen M. now fit and they are all new. Thank you! That was awesome. Anna and Kaysha just need a pair of spring sandals and I think we are set for spring and summer.
I packed up a keepsake box for Samuel today. It is full of alot of the stuffed animals he received in 2004 while hospitalized. It also has some of his old clothes which no longer fit that scream "Samuel." I hope that in a few years we will open this box and be just as happy to ooh and awe as we were when we found clothes for Anna today. It will be interesting too if he can put a memory for each item into words at that time.
All the symbolism of packing up things and finding life in new things, sorting out everyone's lives it seems, is not lost on me. I have spent some time sorting out some things in my mind as well. The irony of trying to move on, yet where do we go from here as a family unit is certainly a question in my mind. I certainly need to change directions soon and so does Mark. This house is an example of making the best of what you have even if it is not perfect, and that is what we continue to do with our lives. We look to the future to provide hope and something fulfilling for each of us. Yet, I imagine I will always be haunted by certain things we have lived through in the last few years. I just received a note from a lady who just came upon our site and she said that what has happened to Samuel is "unspeakable." That sums up so much right now. Many times I day I flash back to some occurrence, some random memory. Mark and I rarely talk about things out loud other than to refer to life when things were "simpler" and life as it is now. In his mind, moving our room back upstairs is reminiscent of a simpler time and thus a good change. But most of the time, he just doesn't discuss much of the past. Today, I was reminded of the day in 2004 when I begged to be allowed to take Samuel outside into the sunlight which he hadn't seen in months and was told no by a haggy charge RN. I remember calling my Onc to remind him that he said we could go outside and it was probably at that point that he realized we were not going to just blindly be lead around by the noose. I thought of this as I watched Samuel play with the other kids happily in the sun. We have been so lucky to have had nice weather the last few days and he has played like a die hard outside. I have also reflected at what kind of NO life we had then. And revel in how much joy the little things have brought me today. Little things like watching Samuel and Anna play so sweetly together. Little things like going out to swing with them in the backyard. Little things like making them good food which they love and knowing Samuel will be okay later. Little things like unpacking a lost box and finding treasures. Little things like having the time to clean out everyone's rooms and know where everything is again. Little things like listening to the creek run while I am dozing off to sleep knowing my babies are just a few steps down the hall. Little things like no screaming in terror. I think that one takes the cake. I am savoring the here and now and constantly remember that things can change instantly and the memories we are making today could be the ones we savor tomorrow.
Samuel has had NO pain relief this past week and did not need any. Having him off all allopathic meds even those considered generally safe sits well with me. It seems so many of even the OTC meds are not without side effects and some of them can be very serious. Our rule of thumb has become using only herbal medicines we have made ourselves or from trusted sources. If it is allopathic, proceed with caution because you just might find out later this drug promotes cancer in some way. No thank you! Samuel is getting better about putting cream onto his skin every night and if he would just learn that when you need to poop, get to the toilet first, then worry about where I am second, we would have a lot fewer accidents. Hmm. This one might take some more time. If he cannot find me, he will poop in his pants. That makes him very upset.
The 10 year anniversary of my grandma, Delma's death came and went this week. I will one day ask her why she and God chose the day before my birthday for her to die. It is not like I would ever forget that day anyway. Her death was possibly the most traumatic experiences of my life. I remember the utter despair surrounding the circumstances of her death. She literally woke up one day and did not know who or where she was. A week later, she was dead. My final words to her I don't know if she even understood. It was pretty hard to swallow and took a few years to recover from the grief. She was my second mother. I was closer to her than my own mother. She was by best friend. She IS my role model. She is never far from my thoughts and all of my children know who she is. I really miss her. I wondered what she must think as she looks down upon our lives. I told her I would make her proud of me the night before she died. I hope I have lived up to that and continue to strive for better. I wish I had one more day with her. I was barely an adult when she died even though I was 23 at the time. I wish she could know me today. Things would be so different I think now. And oh, how she would love the kids.
In my mind, it feels like we have turned the corner on the gut issues. And what a wonderful feeling that is for all of us. We have next week free and the following week will be Samuel's next dilation and biopsy. I really think there will be a big difference overall.
Praising God for Restoration and joy, which I thought I would never feel again, and yet even that is coming back. Much love.
3/23/07
First off, Samuel is doing fantastic! He woke up clean again yesterday, so that makes three days of five. He woke up soiled today but it was beautiful poop and his butt is almost completely healed as well. I would venture to say we are on to something here. He has been pooping 3-4 times a day but it has all been beautiful poop and he is able to help wipe his own butt and also put butt cream on it. He has also not had a poop accident in a few days. Praise the Lord, He is restoring Samuel.
Yesterday's appt went well if you don't count the drive.....which was horrible, and the fact that I felt physically ill for most of the day simply because we were going to Seattle Children's. We left two hours early for a 50 mile drive and were 15 minutes late. Our first appt was with the psychologist who wanted to see what type of coping mechanisms we have employed. I understand why they do this but we make it pretty clear that Samuel has basically had NO pain meds lately and our coping methods are either TV, baths, massage or suffer. I think we have the bases covered. I explained that we needed something for those late night acute times when we all just want to sleep. While morphine works, it ends up keeping him up feeling hyper and then it takes a bit of time for his gut to start back up. The MD came in after the psychologist and was actually one we have not met but we hit it off with her very well and after discussing everything we have tried, what we do currently and what has been useful in the past, she ended up giving us Neurontin. This was the "miracle" drug Samuel had in Portland which ended his suffering after 24 hours of misery. It supposedly has no GI toxicity, though that is not what I just read. The only side effect I saw was fatigue. We all agreed that at 12am, this was a useful side effect to have so she asks that we give it every night before he goes to sleep to hopefully minimize this late night pains. He won't feel any because he won't wake up. The CNS side effects do not thrill me and the potential GI ones listed are making me think twice about this one as well. We learned yesterday that we basically have NO options at this point. The ibuprofen family is out, the narcotic family is out, the Tylenol family is out. That just leaves the nervine family, which obviously we all agree that Samuel's pain is now nerve pain. Pain that is in the same area lasting for several years eventually becomes nerve pain in which a person is hypersensitive. This is probably why this med worked so well. Second to GI consequences, I do not want to see CNS consequences and my thinking currently is that Samuel has no allopathic drugs of any kind in his body and he is doing great so I am not going to medicate him unless I see otherwise. I don't think we have ever been in a place where he was doing so well that he did not need some type of pain med as he has been doing this week so we will wait and watch.
Ultimately, fixing his gut will fix his butt. I don't remember Samuel's last dose of ibuprofen, probably in late January or early February. He has steadily improved since we got rid of that. His last morphine was very early this month and he has not had the toxicity issues with it that he did when it was given with ibuprofen. I recently read that even benedryl has GI toxicity and that was one med we have generally considered safe and used on those 12am nights when we had nothing else. He hasn't had any of it since I made my Valerian/Scullcap tincture because this seems to give the relaxed effect we were needing vs. the hysterical child who thought he was never going to stop hurting. The MD asked about CAM and I told her our ND was her colleague and apparently she was unaware that Children's even got one. She was thrilled about him being there and about us using him for the past few years as well. I asked about my options if Samuel were to be inpatient for future surgeries and she told me they do acupuncture/acupressure but other than that, there just isn't anything he can receive that won't cause some GI issue. Our best hope is to NOT need anything surgical for as long as possible to give his gut a break from all of these things. She did not know if his gut will ever recover enough to tolerate these meds again. She said, "You probably know more about that than I do." She had never had a patient with so many GI consequences to these drugs. So I guess that will be a question to ask our GI. Never take for granted the luxury of being able to give your child simple pain medicine without consequences. This MD also gets brownie points for NOT asking about Oncology or treatment. Maybe it was just obvious. She had a personality, compassion and a working brain so maybe that is all an MD needs to "get it." Everyone involved was very curious about Samuel's anoplasty in Portland and the surgeon who did it. We explained a bit about what went on and why we were done with the surgeons in Seattle and this MD said she totally respected our decision and understood why we would have chosen Levitt over Healey. All in all, this was a positive experience and I just really need that right now.
This appointment is a big disappointment in a lot of ways however. If Samuel did not have his shunt, things would be different. We will inevitably have to deal with this surgically and the potential problems with medications inpatient does not make me happy at all. Conventional antibiotic treatment during and after surgery only further complicates these matters. I guess when we get to this bridge, I will be pulling our GI, Pain MD and ND together to formulate a plan which will wreak the least amount of havoc on Samuel's gut. At least at this point, I will have three people who won't think we are insane for refusing conventional drugs and who WILL listen when problems arise. At any rate we are supposed to follow up each year with the Neuro Surgeons on this but haven't at all. And FTR, I really liked our Neuro Surgeon and feel like he will always remember Samuel. Or as Mark says, he probably has nightmares about Samuel. But he will understand the complexity of his care when the time comes. So I probably need to make that appointment but I am NOT looking forward to it at all. As I have said before, it would be so great for the shunt to go bye-bye. We will put off crossing that bridge for as long as possible. This MD was surprised to see Samuel still had his port in place, but that is probably the one piece of hardware that is worth it's weight in gold, next to the G-tube anyway.
The other kids stayed with Mark's parents while we were gone. Anna was so cute when she came back home looking for me, who was napping at the time of her arrival and then Samuel who was grouchy. They at least missed all the driving and waiting. It was also nice to have Mark present for an appointment rather than being alone, which is how we mainly do things usually.
I am feeling a bit better today and am so very glad we are not having to return there on Tuesday for the dilation. After that last drive, we all need a break. We are hospitaled out. Mark spent the day building Samuel a new bed and will build Anna a new bed tomorrow. Then they will share a room for awhile and Kaysha will get her own room back. She has been sleeping with Anna for the last year or so and this privacy will be nice for her. Samuel goes to bed at a normal time these days so hopefully the move will be okay. And all of this is an effort to help keep rooms cleaner and more organized with the eventual plan of moving out. The front room is over half painted and done and really looking nice as well. We never decided on the kitchen cabinets so did nothing there. Mark will probably just build custom ones with oak faces for it as time and finances allow.
I am so thankful for how well Samuel is doing right now! I would just love it if when we see our GI next, I can say that he has been great, and getting better by the day. And I pray that his anus will stay open and eliminate the need for more dilations. I pray his next biopsy be normal in his ileum. I did ask my Onc who thought the same as I, swelling/stagnation. So I am not concerned by those results as we are seeing nothing but slow but steady improvement. Restoration feels GOOD. Praise God with us. Much love.
3/21/07
Samuel woke up yesterday completely clean again. Day 2 in a row. And again, he was so happy, all day. It was incredibly wonderful to think that he could actually NOT have to wear diapers at night if this kept up. This morning, he was poopy however. BUT, it was beautiful poop that did not hurt his butt so he is still happy.
Yesterday went well other than our GI was running very late and Mark waited with the other kids in the Backus Bus for TWO hours while we went in. Our GI was so happy to hear that Samuel was doing so well and thought it was incredible that he was waking up clean. Samuel dazzled everyone with his knowledge of dinosaurs and gave them a thorough education on Land Before Time and Land of the Lost dinos, LOL. They seemed to enjoy him. He was his usual outgoing talkative self. Our GI was pleased to hear his butt oozing problems are significantly better and that his diarrhea issues are also better. If Samuel's anus is closing down, I am unaware as things
