Then, I found these from the previous year: (again, from the 30th - 1 yr., 7 mos.)
And then . . . =0) It's great that I can actually do this - he's only 3!!! Hey, this won't be possible for much longer, there will be too many pictures to post! ;0) (7 months)
I keep putting this off (or keep getting interrupted), so I will finally post this. =0) I guess I just don't want to sound so . . . . bah humbug or gloomy. But, since you will need to know a little information in order to pray, and there are at least some of you waiting for an update, here it is . . . an update. =0)
Anyway, the news wasn't so appealing. This has been one of the most negative regular allergist appointments Isaiah has had by far. It was frightening to learn that Isaiah has mastocytosis and even more frightening to find out about all the other allergies. However, when you're told that your child's IgE levels just keep increasing and that things are probably going to get worse, that's when you just want to scream. Worse? You're kidding, right? Why are his levels increasing instead of getting better? No idea. The doctor was just as confused as we were. He did say to have an endoscopy - they can check for mast cell activity and eosinophils (for an eosinophilic disorder not found in blood tests). So, now, a trip to the gastroenterologist is in the makings . . . at least there is one in Orlando . . . I hope.
The doctor believes that Isaiah's counts will not come down since they seem to continue to get worse. He says that Isaiah won't grow out of this. He also says that Isaiah should not attend school, but have home bound services (basically, it's homeschooling). If you remember, I have already been told that if Isaiah were to attend a public school, I would have to follow him around all day (this was by the school district since teachers cannot give Epis any more and it would be too risky to wait for the school nurse). We have even heard this from the doctors, but not as definite as it sounded yesterday. It was usually mentioned casually (apart from the warnings of no daycare), but this was direct. I asked a question and received a firm answer.
So, now we pray. Pray that Isaiah doesn't have a reaction this month or next. Pray that his reactions don't increase anymore. If he does end up in the ER for anaphylaxis this month or next he will be put on a shot of Xolair every two weeks or Prednisone for a while (more than two months . . . think an extended period of time).
Anyway, he was completely asleep when he woke up (sort-of) and sat with his elbows on his lap and head in hands breathing very hard. We thought he was in pain, but when we finally got him to talk he just kept saying, "You wouldn't understand." I thought maybe the pain intensified because he was feeling cold, so I got his electric blanket and plugged it in. By that point, he was out on the back porch waiting for tea. He did have a small conversation with my mom a little later about what had happened. When he came in from outside, he wasn't feeling well - he felt horrible. He said that he was scared and didn't know if he could make it to the chair, let alone in the house. After he sat down, he was just so tired he couldn't keep his eyes open. When he woke up from his nap, he said that he was completely scared to fall back asleep. I won't go into complete details, but he was really scared. So scared that he hasn't fallen back asleep yet and keeps coughing, moving, etc. to keep himself awake.
Please keep my dad in your prayers. He is worried that the leukemia has gotten worse, but refuses to tell the doctors (or anyone else who calls . . . if you know him, you more than likely know why he won't tell you). He doesn't even tell me what's going on unless I catch him crying in the middle of the night. He's in a lot of pain and he's scared (and the sweetest side I've seen in my dad, he's scared about leaving my mom behind, alone). It's strange to hear your parents talk about death and the unthinkables, especially when they're ill. I'm sure my dad's fear is real and not just imagined, but please pray that he finds peace even amidst the pain and the uncertainty of this disease.
Cancer stinks. Allergies stink. Mastocytosis stinks. Life doesn't. No matter how bad it gets, there is still something sweet about life. Even sweeter (and grander) still is the God we serve! How awesome is He?!? =0) I mean, really - this is the God who formed us in the womb, who knew us before we even existed on this earth. He obviously has a plan, so all we need to do is rest in His plan . . . easier said than done, but still better than fighting against His will. As I have said before, I still pray for Isaiah's healing, for Dad's healing, for everyone else on my list's healing. That won't change. It's just that the details are left up to God.
. . . to say that we are going back to All Children's this week. I have photos in hand (or on a flash drive) to give to the doctors - just to show them what happened with the prednisone. It worked . . . for about 3 weeks. Then, the rashes came back - yup, they're back! He has spots on his back and torso (which fade, but become red when he gets warm), a rash on his lower back, spots of rash on his legs and arms, a huge spot on his foot with others popping up there as well, and spots of rashes on his arms. It's so frustrating that this keeps happening to him. He itches quite a bit (and he still does that cute little thing with his tongue when he scratches . . . he sticks out his tongue when he scratches). I have been keeping shoes off his feet unless he goes outside (when he wears his Cars shoes) and oddly enough, that has helped. No socks no shoes in the house, just bare feet . . . or Cars shoes . . . or the Big Red Car slippers . . . of the Elmo slippers . . . or the Cars slippers (as for all the bedroom slippers . . . it's a loooong story). =0) Actually, it sort-of goes back to the time where we had to bandage his feet - we had to make sure the slippers dried before we put the slippers back on him and the slippers are still big enough for him to wear since we had to get them big enough to fit over the bandages. =0)
Anyway, our appointment is on Tuesday. Isaiah's hands are peeling a little, so at least they can see how the elocon has been helping - it helped more during the first 3 weeks of prednisone than it's helping now. =0( Poor guy - he itches a lot. His rashes are nowhere near the way they were last year, and definitely not as bad as they could be, but they are still there.
Anyway, I just think it's so neat that potty training finally made sense to him. He is so independent like that - he won't do something unless he wants to and is totally ready. I know his therapists think that they are teaching him, but I think he's teaching them! =0) Just kidding, but he definitely only wants to do things on his own schedule. Unless he learns/teaches himself to do something, it just doesn't click. He's so smart!
us. I just figured I would talk to these guys before we made that appointment. I am also going to bring up having Isaiah's meds compounded (made without preservatives). With all of Isaiah's sensitivities, I wouldn't be surprised if the preservatives in the meds were causing some of these rashes. He can't handle them in the soaps or lotions he uses, so why should we expect his body to like them taken internally? Anyway, there's a lot to discuss while we are there - I just hope my brain remembers everything! =0)Today the world may have cried a river of tears for a little boy’s life that ended way too soon, but we believe Heaven is REJOYCING over Coleman’s job well done.
Coleman was an amazing child of God and we were so honored to be chosen as his parents.
He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.
A quick story. :)
One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “mommy? did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.
Lots of people have mentioned their anger toward God …how can He let this happen when so many people have been praying for Coleman? Why didn’t he answer our prayers?
I just can’t be angry at Our God who sent Coleman to us in the first place. Coleman was a child of God, WE were chosen to be his parents- and how blessed we were. Maybe my feelings will change, but like Coleman, I can’t imagine being angry at God. Would we have loved to have had more time with Coleman? YES! I want him back right now, but I know that’s the selfish part of me talking. I know I will hurt more than I can ever imagine in missing him…and I know I will have MANY days of heartache and anger, but my anger is over the fact we live in a world where we can do so much, but still do not have a cure for this horrific disease. Children are paying the price for that. More on that will come-
I guess what I’m saying is I know for a fact, Coleman would NOT want us to be mad at God. He taught us so much in his time here. His lessons will go on for a very long time. He knew where he came from and he knew where he was going. My heart aches for more time, but I’m SO thankful for the time we got with him, and we know we WILL be with him again. God doesn’t always answer our prayers in the way we want him to…HIS ways are not ours, and that’s hard to accept, but true. It doesn’t mean I don’t question it- it’s hard to understand, but one day we WILL know.
Many people have asked how Caden is doing. Now that’s a long story, but we have assured him that we love him. He is dealing the best way he can- just like us.
I turned my desk Praying Parent calendar today, and thought I’d share what it said…
“We are dependent on God to enable us to raise our child properly, and He will see to it that our child’s life is blessed. One thing I have learned is that I should not try to force my own will on my child in prayer. I have found it is better to pray more along the lines of “Lord show me how to pray for this child. Help me to raise him Your way, and may Your will be done in his life.”
I believe God’s will was done through Coleman. I know it.
For those inquiring:
We will celebrate Coleman’s life on Saturday, Jan. 10th at 10:30 a.m. at Our Saviour’s Lutheran Church in Callender. Visitation will also be at the church on Friday the 9th after 4:00p.m.
Also for those inquiring- Instead of flowers, we’d love donations in Coleman's memory made to either:
The Hospice House of Fort Dodge, Iowa
The Ronald McDonald House of Iowa City
or curesearch.org
We’d like to thank EVERYONE who has helped our family along this journey the past two and a half years. There are thousands to thank. We will never be able to explain how much we appreciate the support for our Team. Our carepage family is the BEST!
To the hospice house- you will always have a special place in our hearts. You made the most difficult time of our lives one filled with love. Nadine and your staff, God bless you. I know Coleman would like us to thank you as well for making his last days as comfortable as possible for him- and for us all.
Here is one of my favorite pictures of Coleman…
God bless you baby. We love you so much.
Coleman said long ago, "some day I won't need NO more meds or pokes, wight mommy?”
No more sweetie. You are free.
One more story to share…thanks again Nadine.
The Parable of the Twins-
Once upon a time, twin boys were conceived in the same womb. Weeks passed and the twins developed. As their awareness grew, they laughed for joy, “isn’t it great that we were conceived? Isn’t it great to be alive?”
Together the twins explored their world. When they found their mother’s cord that gave them life, they sang for joy, “how great is our Mother’s love, that she shares her own life with us!”
As weeks stretched into months, the twins noticed how much each was changing. “what does it mean?” asked the one. “It means that our stay in this world is drawing to an end, said the other. “But I don’t want to go”, said the other, “but maybe there is life after birth.” But how can there be?” responded the other one. “We will shed our life cord, and how is life possible without it? Besides, we have seen evidence that others were here before us and none of them have returned to tell us that there is life after birth. No, this is the end.”
And so the one fell into deep despair, saying, “If conception ends in birth, what is the purpose of life in the womb? It is meaningless! Maybe there is no mother after all?” “But there has to be,” protested the other. “How else did we get here? How do we remain alive?”
How you ever seen our mother?” said one. “Maybe she lives only in our minds. Maybe we made her up because the idea made us feel good?”
And so the last days in the womb were filled with deep questioning and fear. Finally, the moment of birth arrived. When the twins had passed from their world, they opened their eyes and cried for joy. For what they saw exceeded their fondest dreams.
Author Unknown
OH OH OH I have to say too-
Dr. Woods from Des Moines and Dr. Gilheeney from NY who called us personally- GOD BLESS YOU! Our world needs more doctors like you. It means so much to us. We will never forget your compassion. Thank you.
Blessings to you all,
Nev-va Div up-
Team Larson
UTUBE is going to pull this video because of the song used, so I thought I'd try to post it and see if it's still viewable...Cman and his bunny foo-foo. That bunny helped him through many hard times, and he still twirled the ribbon even on the high doses of morphine. This is Cman's second bunny after he lost his beloved first. A story of LOVE...
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