In-the-Spirit-of-Thanksgiving

I have had Maddy, Sarah and Joshua all up with me tonight. Maddy and I have been watching videos, and I am thankful that there are such wonderful messages that we can watch together. It helps me be thankful, even when my body and mind are exhausted. I am blessed.

In-the-Spirit-of-Thanksgiving

The rest of the day......

Well loyal readers, I thought I would give you an update on how the day went.

1) I got a call from the rep for Enfamil telling me that she had some samples for Maddy. The call came at 9:00 am and she said if I could get to Gladstone before 10 am, she could give me some samples. So, I gave up my nap, got dressed and went over to meet her. She gave me two cases of Nutramigen, worth almost $400, and told me that she would arrange for some samples of another formula called Nutramagin AA, which is even more "broken down" than the regular stuff. So, that was the first blessing of the day.

2) I got another call driving back telling me that I could get three days of samples for Maddy's thickener, instead of having to buy it from the Feeding Clinic. (We ordered the thickener earlier this week but it won't be here until Monday.) Since I had to go out that way anyway, which makes it was another $13 blessing.

3) I got several other errands done, including picking up a prescription for Josh at the doctor's office. While we were there I gave them the phone number for the Enfamil rep, and they were able to call her and get some formula for another baby whose mom couldn't afford it. The mom actually came out to the waiting room to thank me for giving them the contact info. (I am still amazed that formula reps don't usually work with family care doctors, only pediatricians and specialists. Sarah, the nurse there, told me that she is pretty sure that the rep said yes because I had already talked to her and she knew about Dr Scott from that conversation.) I am glad I could help another little baby. He was adorable, and the mom reminded me so much of me four or five months ago. I gave her my phone number and told her that if she needed to talk she was welcome to call me. Even if I never hear from her, I know that I was on the Lord's errand. I am grateful that he trusts me.

4) I picked up Maddy to go have lunch with Michael, and got a call from someone at the school district asking me if I could come pick up some things for my children. I asked them what they were, and they said that they had some items donated to the district, and that our three kids were part of the group chosen to receive them. I picked them up, but didn't have time to look at what they were. When we opened them up, after the kids had gone to bed, each bag had a brand new pillow with pillow case, a warm blanket, socks, and a pair of sweats. The kids will love all of the things, especially with all the cold weather. The sweats are all too small for the kids, but they will be great to pass on to the family that we are adopting. We will talk with the kids about it on Monday, but I am sure they will be glad to have more new things to give the family. They have been coming up with wild schemes to get more things for that family all week.

5) At my doctor's appointment there was no real news. We know a few more things it is not. They took 14 more vials of blood, some will be processed here, some will be sent to Utah, and some will be sent to Philadelphia. It will take a few weeks to get the results. They are also going to do an upper-GI to look for a certain kind of ulcer that doesn't show up on blood tests, and to see if there is anything else unusual there. The doctor is going to call and see if he can twist some arms so that they will do it, even though I am still havign fevers. Someone should call me Monday to let me know when they are going to do it. He also added several more areas that he wants scanned when they do the MRI next Wednesday. They started me on another antibiotic. It is the last one to try that we haven't used yet. Anything after this would have to be an IV antibiotic. He doesn't really expect it to work, but it is one of the things to "check off the list" as we are trying to figure out what it is.
He reminded me today that we have excluded thousands of possible diagnosis, but that there are still quite a few more that we need to discard, and it may be a while before we get it figured out. He also wanted me to be prepared for the chance that it will go away at some point, and we won't ever know what it is. If that happens, it could come back, or it could just end up an episode that never has an explanation. He says that it happens more often than most people would think, but that as long as I am having more than two fevers a week, we need to keep looking for the cause.

6) I have laughed a lot today. There have been a lot of moments of mirth at our house. From Maddy getting her finger stuck in her nose, and fussing until I helped her pull it out (it wasn't really stuck, she just kept pushing it in farther instead of pulling it out for some reason) to Kat deciding to make toilet paper art, there have been lots of small moments that remind me how lucky I am to be a mother to such great kids. I am also very grateful for a husband who laughs along with me, and who can see the humor even in dark situations. No matter how bad things get, when you can laugh and smile with the person you love most in the world, it feels like a blessed day.

7) We still haven't had any snow or freezing rain, but the weather people keep promising it will arrive sometime tonight and stay, in at least small amounts, until Sunday night. Mom and Mark went up to visit Polly and help her with moving into her new house, Maleena and Max are traveling down to California, and Anna is heading to the coast for the weekend. So, we are keeping lots of people in our prayers, praying that their travel is safe!

8) Sarah has had a migraine every day for the last six days. She got another one tonight. The are upping the dosage on her prophylactic medications, and we are hoping that helps. They still don't have the MRI/MRA results, but hopefully by next Wednesday they will know if there is anything beyond the migraines going on. In the meantime, prayers for her are always appreciated.

I am so grateful for a warm house, food for everyone (including Maddy), clothes that fit, and insurance that covers the ongoing medical costs for the whole family. I am blessed.

Overwhelmed

Some days I just feel overwhelmed. It isn't debilitating, and it doesn't stop me from doing things, but it certainly makes me wish that life were simpler. Usually I just get on with life, but today I thought I would share what is overwhelming me.

1) Maddy is almost out of thickener. It has already been ordered, but it might not arrive before we run out. I left a message for the feeding clinic to see if there is somewhere that we can buy a few days worth in the Portland area. If there is, I will need to go pick it up, hopefully before the snow/freezing rain hits.

2) Which leads to the fact that we are supposed to get snow/freezing rain. I love snow, I love playing in it, watching it fall, and the peace that comes from walking as the snow falls to earth. I do not love freezing rain. Snow I can drive in, freezing rain I do NOT drive in. It is dangerous, and I am always worried about anyone who has to go out in it.

3) Michael is enjoying his new job, but he comes home exhausted. There are a lot of things he is learning, and so by the time he gets home, his brain is already fried. I am glad that he has a great new job, but it will be nice when he is feeling more comfortable with it, and a little less grumpy when he gets home.

4) I go see the infectious disease specialist this afternoon. Some of the lab results are supposed to come back this morning. Either we will have a clear idea of where we are going, or we will know what tests we need to run now, but in some ways I am not sure I want to know. It could be great news, that we know what is wrong and it is easily fixed. It could be okay news, that we know what it is and the treatment isn't easy, but it is treatable. It could be bad news, that we know what it is and it isn't treatable, and I will always be in this pain. Or it could be more waiting, not sure what is wrong, but knowing that something is wrong and we have to keep trying to find out what it is.

Okay, there is more stuff, but it is either small stuff (I am almost out of clean underwear) or stuff everyone deals with (like I hate the extra 5 pounds I have gained since I got sick and haven't been able to exercise). I get a few hours for a nap, and I am going to take it! (Thanks Anna for taking Maddy!)

Christmas Spirit

I asked the kids, about a month ago what they wanted to make sure we did for the holidays. I have been pretty sick since October, and since that doesn't look like it is going to change very quickly, I needed to find out what was most important to them, so that I didn't waste energy on things they don't really care about. So, it turns out that these are the things the kids definitely wanted to have/do this year:
1) Have a Christmas Tree
2) Adopt a family for Christmas
3) Make Cookies with friends
4) Make home-made hot chocolate on Christmas Eve, and have Baby Jesus Birthday cake (Baby Jesus Birthday cake is angel food cake with frozen strawberries and home-made whipped cream)
5) Go shopping with Michael for a present for me (this has become a tradition that the kids love, and Michael is learning to love)

Those requests seemed reasonable. The cookie making is set up for the 23rd. The Hot Chocolate and Baby Jesus Birthday Cake can be done Christmas Eve, and we are shopping for the tree this weekend. I am not sure when Michael is going to take the kids shopping, but I put aside the money for them to do it in our budget. Until about a week ago, I was really waffling about whether to adopt a family this year.

Things have been so tight for us, and then we found out that Michael's new employer pays differently than his old one, and so for the first 6 weeks, we will only get paid for 2 weeks worth of work. After that, we will be okay, but it means we are having to be even more creative. Since I do most of our holiday shopping throughout the year, and I got the rest of the stuff on Black Friday by ordering stuff online, there will be some presents under the tree, and we already sent the presents to my sister's family (who we have in the family gift rotation this year). I have gifts that still need to be mailed to a few family members on Michael's side, but no one will be forgotten this year, even if the gifts are fairly inexpensive.

Which brings me back to my dilemma about what to do this year. I always wanted to have adopting another family as part of our family's holiday tradition, and I am thrilled that the kids consider it an important part of our holiday. Even last year, when we were so broke we weren't sure how we were going to pay for my medication, we were still able to help another family. The help came from our food storage, for the most part, and by passing on a Christmas tree that we had gotten for free. I remember praying that the Lord would help us find a family that we could help, so that we wouldn't have to break the tradition of adopting another family. The Lord provided a family we could help, and I am grateful that we were listening to the whisperings of the Spirit, so that we would know who to help.

Which brings me to several nights ago, when I prayed that Heavenly Father would help me to know what His will was for our family this year. I asked Him to help me know if we should focus on our family, or try to find another family to help. I told Him that I would need His help, since I didn't have as much energy as usual, and I have been trapped in the house and didn't really know of any families that we could help. I fell asleep after that prayer, only to be awakened two hours later, with the distinct impression that if I wanted to be worthy of the blessings that the Lord wanted to bless my family with, that I needed to be ready to adopt a family.

I got on Craigslist, typed in "Christmas" in the wanted section, and there was an ad that had been posted half an hour before asking for help for a woman, her daughter, and two of her granddaughters for Christmas. The girls were the right ages that we could give them some of our hand-me-down toys and clothes. I emailed the woman, and asked if she would be okay with used things, and if so, could we bring her some Christmas gifts on Christmas Eve. I left it up to her whether she was willing to have the kids bring the gifts wrapped, or if she would prefer to wrap them herself to give to the kids. She emailed me right back and told me she would love to have the kids come and deliver the gifts, and that they would be very happy to have used things, as most of their clothes and toys come from Goodwill. She also told me that she had received four emails before me, and all of them had been very negative, telling her she shouldn't have even asked for help. She was about to take the posting off, in despair, when she got my email. She said it made her cry. Which, of course, made me cry when I read it.

We have emailed back and forth several times to make sure we are providing them with things that will be meaningful for their kids. My kids are sorting through the toys and clothes in their room, finding toys that are still in good shape and have all of the pieces. They are talking about how they are looking forward to wrapping all the presents on the Monday before Christmas for our Family Home Evening activity. It has been wonderful to see my children focus on how they are going to help someone else this holiday season. I am so glad I woke up, and followed the prompting to look for a family NOW to adopt.

The Lord reminded me that there is nothing good that we do that He won't turn around and bless us for. The evening after we had "adopted" our family for the holidays, I got a call from a woman I have never met. She is in charge of a bible study group at another church. She called because one of my children's teachers had nominated our family to be "adopted" for Christmas. She was calling to get sizes for the kids and to find out what they were interested in. She had lots of questions, and to be honest, I was so stunned that she had called that I answered her questions, but it didn't really sink in until a few hours after she called. I considered calling her and telling her that she should find another family, that we were okay, and that we didn't "need" any help. As I knelt to pray that night, I asked Heavenly Father what I should do. I felt this sweet peace that this was what Heavenly Father wanted for our family, that by accepting this help, we would not be depriving anyone else, and that if our family felt good in helping another family, that those who were serving us would be equally blesses in their lives.

So, I did call back, but to invite the group to come and share some holiday cookies and carols with all of our family when they drop the gifts off. They are coming the same day that we are baking our Christmas goodies, so we will be able to send each family home with a plate of goodies. My children will learn about giving generously and receiving graciously. And my heart will be stronger as I face the medical challenges, because I will have given and received love this holiday season. Isn't that the true Spirit of Christmas?

Maddy update

Maddy has been having some hard times with the new feeding tube that she got when she was hospitalized over the weekend. They had her getting bolus feeds (a fairly large amount over a short period of time) during the day and then continuous drip feeds all night. She was doing okay with that, although not liking the day feeds a whole lot. She also hasn't done very well with the heat, and has been resisting taking anything by mouth all day, so we have had to do almost all of her feeds by tube. The doctor was concerned about her not eating and that the heat was what was stealing her appetite.

Today she also started crying all through the bolus feeds. The third feed, I went to check the placement and couldn't get "pull back" to make sure it was still in her stomach. The dietitian at Apria couldn't verify it either, so we went into the feeding clinic. They could verify it was in the right place, but when we started the feed, she started screaming again. So, they put the rate down to what it is when she is having the continuous drip at night, and she calmed down.

So, for now she is on the continuous drip 20 hours a day, and she can eat from a bottle if she wants, but she doesn't have to. So far she hasn't been willing to take anything at all. All day she has taken less than 2 ounces by mouth. We meet with the full feeding clinic specialty team tomorrow afternoon, and they will decide what to do at that point. They will for sure change the feeding tube, and I will get more training on how to do it. They will also talk about what feeding schedule makes most sense, whether she needs to be admitted, and we will talk about whether it is time to put a direct feeding tube in that would be put in surgically and would go directly into her stomach.

Baby Snuggles

Just when I think the crying and fussing and needing ME
is going to drive me insane
a slobbery snuggle warms my soul
and the world is right
again.

Pain Medicine

I was thinking about how grateful I am that I live in a time when we have good doctors, medical tests and procedures that can save lives, and that I live in a country where I have access to good medical care. While I was reading Abinidi's words, it occurred to me that I am also lucky to live in a time when we understand so much about the Lord's prescription for spiritual pain.

I have always struggled with forgiveness, and specifically how to forgive people who either don't believe they need forgiveness, or who feel that I shouldn't be hurt by things they have done. I have realized that I still have to learn how to forgive them, even if they don't want to be forgiven, or don't see the need for me to forgive them. How to do that is not easy, and I am not sure I have it figured out yet, but I am grateful to know that it is possible.

I think that the greatest part of the atonement, which is also the hardest for me to understand on an emotional level, is that Christ can heal all of our emotional wounds, and take the pain away. When Alma and Amulek where forced to watch the believers and their families being burned, he knew that they would be received into heaven, but I am sure that there was great emotional pain that could have come from being forced to watch those events, if they hadn't had the knowledge of the gospel and the healing that comes from the atonement.

While many of the events in my life have been emotionally painful, I know that I have access to the same promises that Alma, Amulek and Abinidi had. I know that Christ has written the prescription, and it is only up to me to fill it, and partake of its healing. I know that to fill the prescription I must be willing to give away all my sins, and offer a broken heart and contrite spirit as payment.