Ammon had his 15 month well check today. He is improving his skills with the help of his ECI therapists, but he is still behind. I had a frank conversation with his doctor and let her know that if we are going to do any kind of tests, it needs to happen this month before we pretty much don't have insurance anymore. (Not completely true- we will have insurance - it just won't feel like it.)
So he got blood taken today and urine samples taken and we are making an appointment with a pediatric neurologist. Let's see if anything pops up.
And things are progressing with Tanya. Check out her blog - she's the one at the top at the moment since she is basically updating daily. In another week or two, I should get a call about the results from my blood test.
So Tanya assures me that the "transplant" is like donating blood. The doctor will give the donor meds to pump up the stem cells and then collect them during a blood skimming for lack of a better word. That is just how it sounds to me. They cycle the blood out and back in while collecting the platelets or stem cells. I'm not too keen on watching my blood being cycled, but it could be much worse. I'm just glad a procedure exists to help get her healed. She's got more life to live and lives to get here I think.
Anyway - first week of school done. It felt like a month. I still have a pile of schedule changes on the desk. We all do. And it's tough cuz everyone is very impatient to have their schedules fixed right now - which isn't exactly humanly possible. I keep trying to tell kids and parents that, but honestly if they wouldn't interrupt we could get it done faster.
Friday, August 30, 2013
Sunday, August 25, 2013
Little Miracles
This week has been busy for me. The week before school starts is often like that. I stayed late two nights last week to get schedules done. I'm sure most of the students who get their schedules on Monday won't appreciate the late nights and sacrifice away from my family, but I do it anyway.
So sometime last week, I stopped to take inventory of my feelings and realized that I felt tangible peace. As I spoke with the case manager, I was even a little excited to get things rolling and set up to go get tested. After wrapping my brain around the possibility of being a match, I've come to accept that fact. Now it's just a matter of proof. . . or not. I'm ready to face whatever comes. The fear has fled. Now I know what Tanya meant. She feels no fear, just peace amidst this storm.
In July I was given the assignment to speak in sacrament meeting from Bishop Davies' talk about building upon the rock of our savior. The scripture in Helaman really stood out to me.
5:12 And now, my sons, remember, remember that it is upon the arock of our Redeemer, who is Christ, the Son of God, that ye must build your bfoundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty cstorm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.
The storm is here. It's beating upon us, but it doesn't seem to have the power it should have. I certainly don't feel like I'm in the gulf of misery or endless wo. From reading my sister's blog entries. I don't think she feels that way either. I have complete confidence in the Savior's atonement and power to heal. I also know he allows us to go through hard things. But it seems just when the boat is about to be dashed to pieces, he reaches out his hand and calms the storm. He is a fourth watch God.
Just a week ago, I was feeling the waves and the winds. The news was not unexpected really, but it did give confirmation to my fears about this disease and what I might be asked to do. I'm grateful to say I feel peace now. That doesn't mean I expect that I won't be the match. I'm okay if I am. I'm ready emotionally for it. I think. I may feel differently when I'm trying to make arrangements for my children and husband, but actually going doesn't seem to frighten me any more. I can only attribute that to the many prayers that I know are being shared.
Friday night I got home late. I sat with my children who have been anxious about school starting. I have a new middle schooler and a new kindergartner and the other one will be in her dad's class which is also a new unknown. Ammon is in a new place as well. There is bound to be some anxiety. As we were sitting in the front room hanging out and talking, I noticed a car stop in front of the house. When the lights turned off, I got up and saw someone walking to our door. I wasn't expecting anyone.
I met this lady at the door and wondered what she wanted. She didn't look like a solicitor. After saying hello, she held out her hand with a set of keys and asked if I was missing them. I was so surprised to see my keys that were lost back in July in her hands. She found them two doors down by the stop sign a few weeks ago. She'd put a sign out by her house in case someone was looking for them. I never drive that way. She had also been looking around the neighborhood to see if anyone drove a Hyundai. She tracked me down, even after her son said, "Mom, surely the owner has already made a new set of keys by now." I had, but I had not replaced the clicker.
The day I lost them was the day before we were leaving for Utah for my family reunion. I had set them on the hood of our other car while helping my husband put the cargo carrier on the van. Jhonny drove off shortly after that to get to work while I was working on something else. By the time I realized where the keys had been set down, I knew it was too late. I searched up and down the street where he had driven away. I didn't see them. We looked three times to no avail. I prayed we would find them, but gave up thinking they must have been thrown down the drain and I was sure I would never see them again.
Fortunately the dealership had one blank left for my car that day. I was able to get a copy made just in time to go to my appointment with the dermatologist to remove three moles that looked suspicious. (They are all fine - I did not have cancer.) I would have had to pay $50 for missing that appointment.
We were also able to leave for our trip the next morning because we had a key. I thought that was how the Lord was answering my prayer. So I was very surprised and humbled to see this good woman hunting me down to return the original set. I'm sure Margaret will be blessed for her good dead. I know I am.
And that little miracle just made it more real to me that God does answer prayers. Even though it may seem like he's forgotten his promises or even when you don't see the miracle right away, the miracle is just waiting to prove itself even more. I'm grateful this week for the minor miracles that boost my faith in my fourth watch God. He's pretty amazing when it comes down to it.
So sometime last week, I stopped to take inventory of my feelings and realized that I felt tangible peace. As I spoke with the case manager, I was even a little excited to get things rolling and set up to go get tested. After wrapping my brain around the possibility of being a match, I've come to accept that fact. Now it's just a matter of proof. . . or not. I'm ready to face whatever comes. The fear has fled. Now I know what Tanya meant. She feels no fear, just peace amidst this storm.
In July I was given the assignment to speak in sacrament meeting from Bishop Davies' talk about building upon the rock of our savior. The scripture in Helaman really stood out to me.
5:12 And now, my sons, remember, remember that it is upon the arock of our Redeemer, who is Christ, the Son of God, that ye must build your bfoundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty cstorm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.
The storm is here. It's beating upon us, but it doesn't seem to have the power it should have. I certainly don't feel like I'm in the gulf of misery or endless wo. From reading my sister's blog entries. I don't think she feels that way either. I have complete confidence in the Savior's atonement and power to heal. I also know he allows us to go through hard things. But it seems just when the boat is about to be dashed to pieces, he reaches out his hand and calms the storm. He is a fourth watch God.
Just a week ago, I was feeling the waves and the winds. The news was not unexpected really, but it did give confirmation to my fears about this disease and what I might be asked to do. I'm grateful to say I feel peace now. That doesn't mean I expect that I won't be the match. I'm okay if I am. I'm ready emotionally for it. I think. I may feel differently when I'm trying to make arrangements for my children and husband, but actually going doesn't seem to frighten me any more. I can only attribute that to the many prayers that I know are being shared.
Friday night I got home late. I sat with my children who have been anxious about school starting. I have a new middle schooler and a new kindergartner and the other one will be in her dad's class which is also a new unknown. Ammon is in a new place as well. There is bound to be some anxiety. As we were sitting in the front room hanging out and talking, I noticed a car stop in front of the house. When the lights turned off, I got up and saw someone walking to our door. I wasn't expecting anyone.
I met this lady at the door and wondered what she wanted. She didn't look like a solicitor. After saying hello, she held out her hand with a set of keys and asked if I was missing them. I was so surprised to see my keys that were lost back in July in her hands. She found them two doors down by the stop sign a few weeks ago. She'd put a sign out by her house in case someone was looking for them. I never drive that way. She had also been looking around the neighborhood to see if anyone drove a Hyundai. She tracked me down, even after her son said, "Mom, surely the owner has already made a new set of keys by now." I had, but I had not replaced the clicker.
The day I lost them was the day before we were leaving for Utah for my family reunion. I had set them on the hood of our other car while helping my husband put the cargo carrier on the van. Jhonny drove off shortly after that to get to work while I was working on something else. By the time I realized where the keys had been set down, I knew it was too late. I searched up and down the street where he had driven away. I didn't see them. We looked three times to no avail. I prayed we would find them, but gave up thinking they must have been thrown down the drain and I was sure I would never see them again.
Fortunately the dealership had one blank left for my car that day. I was able to get a copy made just in time to go to my appointment with the dermatologist to remove three moles that looked suspicious. (They are all fine - I did not have cancer.) I would have had to pay $50 for missing that appointment.
We were also able to leave for our trip the next morning because we had a key. I thought that was how the Lord was answering my prayer. So I was very surprised and humbled to see this good woman hunting me down to return the original set. I'm sure Margaret will be blessed for her good dead. I know I am.
And that little miracle just made it more real to me that God does answer prayers. Even though it may seem like he's forgotten his promises or even when you don't see the miracle right away, the miracle is just waiting to prove itself even more. I'm grateful this week for the minor miracles that boost my faith in my fourth watch God. He's pretty amazing when it comes down to it.
Sunday, August 18, 2013
With God anything is possible
That was the title of today's Relief Society lesson. We talked about how God puts us in positions that are hard, but we have the promise of his aid in everything. This weekend has been a bit emotional for me.
Friday, my sister sent the news that she would need a bone marrow transplant. This is going to be a long treatment/recovery. Fighting cancer Acute Myeloid Leukemia to be exact will not be easy for her or those of us who love her. Friday after a long week of exhausting work that isn't done, I got the kids to bed and instead of falling to sleep myself, I finally let myself emote.
I can't really even say what I was feeling. I just cried. I know it's nothing compared to what she is going through, but I couldn't help but weep.
Sometime soon, my siblings and I will be getting tested to see if we are a match. We are the best chances of that. I hate needles, but getting my blood drawn is nothing new. I've at least done that many times. I just need to find a place that will do it quickly without costing me too much.
Friday as I was trying to convince myself that I likely won't be a match and that I'm too old to go through that much pain. . . it occurred to me that it might be very likely I could be the match.
Just last month I was asked to speak about building upon the Rock of our Redeemer and how he will sustain us during those stormy times. I heard from someone else about how we are asked to speak about those topics that we need the most. To my knowledge my other siblings didn't get asked to speak.
Then I let myself cry and wear the idea of being the match. There is no way I would say no. I imagine the Lord in the garden of gethsemane saying, "Oh Lord take this cup from me, but if thou wilt, I will drink it up."
I can deal with constant minimal pain. I've been doing that my whole life. It's that acute immediate pain I'm mostly afraid of. I hope they put me under. I could probably stand it then. I'm already mentally preparing for a trip to Omaha. It should come right around my birthday. What better gift than the gift of life?
The Lord will not give us anything that we can't handle, but he knows what is hardest for us and that is what he asks of us so that we must rely upon him and his grace. That confirmed it to me again. Anticipation of pain is probably my greatest fear. More than death. Perhaps not more than mice, but . . .I haven't been as successful at avoiding pain.
This is one of those things that I've heard the treatment is pretty tough on the donor. I've never gone through something that difficult without at least my husband and mom near. My husband won't be able to be there with me, because he will need to stay with the kids. And my mom if she is there will likely be at the side of my sister who lets face it is going through much more.
As I contemplate all of this. . . I may not be the match. But I want to record these feelings. Because I'm praying one of us at least will be the match. And I want to remember that that person will likely need support too.
Other feelings I've had revolve around how much I love my sister and how happy I am for her life right now - minus the cancer of course. She is so happy with her little boy and her wonderful soul mate. I hate that she has to go through this. Perhaps that is the protective older sister in me.
And lastly, I keep walking around going on with my life and then like running into a pole or a brick wall I think, "How can life keep going on. Don't you know my sister is fighting cancer??"
Friday, my sister sent the news that she would need a bone marrow transplant. This is going to be a long treatment/recovery. Fighting cancer Acute Myeloid Leukemia to be exact will not be easy for her or those of us who love her. Friday after a long week of exhausting work that isn't done, I got the kids to bed and instead of falling to sleep myself, I finally let myself emote.
I can't really even say what I was feeling. I just cried. I know it's nothing compared to what she is going through, but I couldn't help but weep.
Sometime soon, my siblings and I will be getting tested to see if we are a match. We are the best chances of that. I hate needles, but getting my blood drawn is nothing new. I've at least done that many times. I just need to find a place that will do it quickly without costing me too much.
Friday as I was trying to convince myself that I likely won't be a match and that I'm too old to go through that much pain. . . it occurred to me that it might be very likely I could be the match.
Just last month I was asked to speak about building upon the Rock of our Redeemer and how he will sustain us during those stormy times. I heard from someone else about how we are asked to speak about those topics that we need the most. To my knowledge my other siblings didn't get asked to speak.
Then I let myself cry and wear the idea of being the match. There is no way I would say no. I imagine the Lord in the garden of gethsemane saying, "Oh Lord take this cup from me, but if thou wilt, I will drink it up."
I can deal with constant minimal pain. I've been doing that my whole life. It's that acute immediate pain I'm mostly afraid of. I hope they put me under. I could probably stand it then. I'm already mentally preparing for a trip to Omaha. It should come right around my birthday. What better gift than the gift of life?
The Lord will not give us anything that we can't handle, but he knows what is hardest for us and that is what he asks of us so that we must rely upon him and his grace. That confirmed it to me again. Anticipation of pain is probably my greatest fear. More than death. Perhaps not more than mice, but . . .I haven't been as successful at avoiding pain.
This is one of those things that I've heard the treatment is pretty tough on the donor. I've never gone through something that difficult without at least my husband and mom near. My husband won't be able to be there with me, because he will need to stay with the kids. And my mom if she is there will likely be at the side of my sister who lets face it is going through much more.
As I contemplate all of this. . . I may not be the match. But I want to record these feelings. Because I'm praying one of us at least will be the match. And I want to remember that that person will likely need support too.
Other feelings I've had revolve around how much I love my sister and how happy I am for her life right now - minus the cancer of course. She is so happy with her little boy and her wonderful soul mate. I hate that she has to go through this. Perhaps that is the protective older sister in me.
And lastly, I keep walking around going on with my life and then like running into a pole or a brick wall I think, "How can life keep going on. Don't you know my sister is fighting cancer??"
My cheesy boy
However - he is very good at climbing up the stairs. He does it about once a day. This has strengthened his core and gotten him up on all fours and he's learned how to cross crawl from it as well. I've never been so proud to see my baby crawl!! Hurray! He is also picking up more and more on imitative. We get kind of excited when he copies us or shows recognition in meaning. He played peekaboo with me on the way home from our family reunion and I was pretty excited about it.
He waves once in a while too. He kind of says "All done." He is learning to feed himself although it's messy business.
He likes to cruise. Probably peer pressure from daycare where all the other kids are up on twos and he still kind of gets around on fours (but not on his belly anymore!!)
I love this cheesy grin of his! I've never seen a kid this young give such a fake cheesy smile, but he loves to do it when he's especially proud of himself or when we're pretty proud of him.
Friday, during OC therapy, he pulled up on a toy and we all clapped and cheered for him because he did it right. He went to clap his hands too and fell down. It startled him, but he was fine. I was excited that he went to clap his hands! That is a rarity for us.
I love my little boy so much! Going back to work is hard. I miss him while I'm away. And last week I was away a lot! I've had a fun Sunday afternoon playing with him.
Summer outings
Houston Herman Park in the Japanese Garden
Heading to UT for Family Reunion
Cousins that could be sisters
Heading back home to Texas
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