Congratulations are in the air! It has been a big week for Tyler. And for me. Things are much calmer and settled at the house now, even with the pressure of meds. Ty has picc line medicines plus his regular treatments, plus a few extras, for a total of nine times in each 24 hour period. For a total of 20 doses of something or others...but this will only be for another week. I had to administer the IV meds and found it not as harrowing as I first anticipated. Ty is a trooper and holds very still and is patient.
We held a gradutation or promotional ceremony last night for Ty and Caleb. Ty finished his Kindergarten curriculum and is now a First Grader! Caleb promoted from preschool to pre-K. I gave them awards and certificates like they would in public school. We had some family friends over along with cousins Andrew and Jonathan and Aunt Claudia. Uncle MAtt had to work late. I tallied up the points from the sticker charts and awarded some special recognition. Caleb was beaming as well. Ty gave tours of his Reading House and presented all guests with a book he and I created for this event.
Speaking of graduations, we are off this AM to San Diego for the very special event of my son-in-law's graduation from medical school. He is officially a doctor! He is married to my youngest daughter, and the father of my very special boy, Elijah. They will now move from San Diego to Long Beach for his Internship. I can't wait to see Eli!
We are going from there to northern AZ for a short camping trip. At our age, we still love camping, but are not privileged to own an RV. So, we chose a KOA with some ammenities our two-room tent does not afford out in the wild. Plus they have a miniature golf course, a swimming pool, a club house, SHOWERS, REAL POTTIES, etc. I am looking forward to some relaxation without children...or at least without being responsible for them!
My spiiritual mom is in the hospital in Denver with a serious condition...I shall pray for her and try not to worry...
Well, we are about to "Hit the road!" as they say. Not sure if I will have Internet access on our trip...so to-da for now!
Saturday, May 31, 2008
Tuesday, May 27, 2008
Happy Day for Tyler!
Today was a happy day for Ty. He returned home from the hospital. He came to us with a picc line and has to have antibiotics administered through it several times a day in addition to his normal routine of treatments. But, at least he is home. And he is getting better. As much as any CF patient gets better. Maybe more since so many prayers went up on his behalf. He is active and wound up. He is happy to be out of the cooped up hospital room where he was forbidden to run the halls or even leave the room. He is sassy. He is thinking up things to get into. Yes, he is okay again!
Caleb was anxious to greet him. He kept asking all day if Ty was coming home. He didn't want to go to the park or McDonalds out of concern that Ty would get home and he would not be there to greet him. Sweet little brother!
Baby Girl will be glad to have Mom and Dad home again. She loves her grandma, but obviously missed her parents. She was sleeping when Ty got home.
His triumphant arrival was squelched a tad when a nurse showed up to teach us how to use the picc line and proceeded to have Dad & me give him his dosage. It was more fun at the hospital because they had machines that beeped and blinked. We have to do this by hand. It does, however, take less time than the machines. It is a bit scary because a picc line is a direct line into the veins near the heart. An overlooked air bubble could kill him. But since I have been around such things most of my life, it is not intimidating. Just a tad nerve-wrecking! Actually, I think we will be fine.
I only have to be involved for three days and then I go on vacation. I feel a little guilty leaving at this time. But, as my husband pointed out...in the last 30 days I have had the kids 27 days. and all but 10 were overnighters. And the last 7 were 24/7 after only a one-day break from a weekender. So, I guess I have earned my vacation time. I just wish it was after he finishes his picc line meds. But Dad is there and Mom knows how to do it too, so they will all be fine.
It is just that I really do love being with my grandkids. I have discovered that I am not nearly so impatient with them as I was as a parent. I guess I finally figured out that kids will be kids and do what they do and it really is not a matter of the world coming to an end. I have learned to pick my battles so to speak and that most battles are more for the opinions of others than to teach lessons of life. Hurrah for grandparenting!!!
Caleb was anxious to greet him. He kept asking all day if Ty was coming home. He didn't want to go to the park or McDonalds out of concern that Ty would get home and he would not be there to greet him. Sweet little brother!
Baby Girl will be glad to have Mom and Dad home again. She loves her grandma, but obviously missed her parents. She was sleeping when Ty got home.
His triumphant arrival was squelched a tad when a nurse showed up to teach us how to use the picc line and proceeded to have Dad & me give him his dosage. It was more fun at the hospital because they had machines that beeped and blinked. We have to do this by hand. It does, however, take less time than the machines. It is a bit scary because a picc line is a direct line into the veins near the heart. An overlooked air bubble could kill him. But since I have been around such things most of my life, it is not intimidating. Just a tad nerve-wrecking! Actually, I think we will be fine.
I only have to be involved for three days and then I go on vacation. I feel a little guilty leaving at this time. But, as my husband pointed out...in the last 30 days I have had the kids 27 days. and all but 10 were overnighters. And the last 7 were 24/7 after only a one-day break from a weekender. So, I guess I have earned my vacation time. I just wish it was after he finishes his picc line meds. But Dad is there and Mom knows how to do it too, so they will all be fine.
It is just that I really do love being with my grandkids. I have discovered that I am not nearly so impatient with them as I was as a parent. I guess I finally figured out that kids will be kids and do what they do and it really is not a matter of the world coming to an end. I have learned to pick my battles so to speak and that most battles are more for the opinions of others than to teach lessons of life. Hurrah for grandparenting!!!
Friday, May 23, 2008
Winds of Adversity
Ty is still in the hospital. It seems his infection is quite strong and resisting the orginal and usual treatment. Lots of prayers are going up for him. He does have the best CF doctors around. Mom and Dad have been by his bedside 24/7.Caleb and Baby Girl have been with me 24/7. Caleb misses Ty a lot and even refused to go to Story Time at the library until Ty gets home and can go too. He doesn't want to do the usual crafts and park routine either. But he did bake cupcakes...for Ty...We hope to have Ty's Kindergarten promotion party this coming Friday...if he is home and well enough. CF is a terrible disease that attacks children...since all CF patients are born with it. Diagnosis now is usually at birth since many states now include testing for it at birth routinely. AZ just implemented this in 06 or 07. Prior to that, most DX occurred before the age of 3. Ty was about 2 2/3 years old. Some people made it into their preteens or teen years without it being detected, but that can have serious consequences.
Well, the CF Foundation is in constant research mode. I understand that actually, they can cure it in the embryonic stages in a test-tube baby situation. But once the embryo is implanted in the mother, the cure cannot get into it. YET. At least they know what causes it and have begun to understand how to fix it. I MUST believe that this disease will one day be irradicated. And I MUST believe that God, in His wisdom, has a purpose and a plan in all of this. And that He is, in fact, greater than this CF issue. It is, after all, a genetic misfire. A mutated gene. Surely, the Creator can fix that! I am not so vain as to assume that He MUST heal Tyler or that He MUST provide the medical cure, but I am not so ignorant as to assume He can't or won't either. I will believe in His love and His plan. I will believe for His healing touch. And I will accept His will.
I understand that what Ty is going through is not uncommon among CF patients. Most have been hospitalized younger than he. But, the specific condition he is battling usually is fought at an older age, also. This is very scary. My daughter is a very strong woman. She is a woman of faith. I am proud to be her mom. Please keep Ty in your prayers...and the rest of us as well.
Well, the CF Foundation is in constant research mode. I understand that actually, they can cure it in the embryonic stages in a test-tube baby situation. But once the embryo is implanted in the mother, the cure cannot get into it. YET. At least they know what causes it and have begun to understand how to fix it. I MUST believe that this disease will one day be irradicated. And I MUST believe that God, in His wisdom, has a purpose and a plan in all of this. And that He is, in fact, greater than this CF issue. It is, after all, a genetic misfire. A mutated gene. Surely, the Creator can fix that! I am not so vain as to assume that He MUST heal Tyler or that He MUST provide the medical cure, but I am not so ignorant as to assume He can't or won't either. I will believe in His love and His plan. I will believe for His healing touch. And I will accept His will.
I understand that what Ty is going through is not uncommon among CF patients. Most have been hospitalized younger than he. But, the specific condition he is battling usually is fought at an older age, also. This is very scary. My daughter is a very strong woman. She is a woman of faith. I am proud to be her mom. Please keep Ty in your prayers...and the rest of us as well.
Wednesday, May 21, 2008
Today there are Two!
There will only be two children in my care today. Perhaps for the rest of the week. Ty did not return from the doctor appointment, but made his debut at the hospital. This is not the first time the docs have wanted hospitalization, but it is the first time they have insisted on it. Baby Girl and Caleb spent the night with me at my house. Right now, they seem more comfortable here than in their own home. Their house is huge for one thing and I think that when people are missing, it seems overwhelming instead of homey. There is still some tension there as well and even adults can feel it. Children are even more sensitive.
Anyway, I do not know how Ty is. His father was very abrupt on the phone. I didn't take it personally. He is worried. He feels guilty. We all do. My daughter says the docs say that this has nothing to do with his day to day care. It is a common problem. But they have to do tests today that require sedation. Poor Ty. Caleb misses him terribly and wanted several reassurances that Ty actually had a bed at the hospital. I think we are going to get to see him today. Hopefully Caleb can too. Depends on the tests. It is Children's Hospital so they do have different rules of visitation with siblings.
Ty did speak briefly with me on the phone last night. He is concerned about the party we were planning for his finishing Kindergarten. He has a former babysitter in town who was plannning to come. We have to postpone it until next Friday. She will have to return to her new home state by then. Oh well. She is welcome to come see his reading house and car and all the projects that will be on display. Caleb will be moving up from preschool to pre-K also. Ty also wants me to bring him the portable video player I promised him. Please keep him in your prayers.
Anyway, I do not know how Ty is. His father was very abrupt on the phone. I didn't take it personally. He is worried. He feels guilty. We all do. My daughter says the docs say that this has nothing to do with his day to day care. It is a common problem. But they have to do tests today that require sedation. Poor Ty. Caleb misses him terribly and wanted several reassurances that Ty actually had a bed at the hospital. I think we are going to get to see him today. Hopefully Caleb can too. Depends on the tests. It is Children's Hospital so they do have different rules of visitation with siblings.
Ty did speak briefly with me on the phone last night. He is concerned about the party we were planning for his finishing Kindergarten. He has a former babysitter in town who was plannning to come. We have to postpone it until next Friday. She will have to return to her new home state by then. Oh well. She is welcome to come see his reading house and car and all the projects that will be on display. Caleb will be moving up from preschool to pre-K also. Ty also wants me to bring him the portable video player I promised him. Please keep him in your prayers.
Tuesday, May 20, 2008
CF is a TERRIBLE disease!
Not that ANY disease is good, but CF seems so unfair! Ty is coughing and coughing dispite his treatments. It may be because I let him get in the pool on Sunday. We did have cholorine in it, but perhaps it did not have enough time to saturate sufficiently. So, I feel guilty! Which is better...to keep him cooped up and isolated so his CF can lay more dormant, OR to allow him a bit more noraml life and risk infection? Even the CF Foundation does not have the answer!
He cannot play outside in the wind. He cannot play in the dust or in the garden. He cannot run and get overly heated. He cannot go nose to nose with an animal, or even sit in the same spot as the dog! He cannot play team sports, especially outside, but even inside, as if he has a cough, he will have to let his teammates down and sit on the sidelines. He cannot have a spontaneous snack, unless he has enzymes with him. (we keep them everywhere!) And sometimes he has to explain them to curious peers. He mostly won't though and just walks off with his head down, or pops them in his mouth and ignores the other children.
Ty is a fast runner. He loves gymnastics and building things. But he gets tired of his treatments. Often I find the mask of the SVN machine hanging from his chin rather than on his mouth. He will put it back up when told, but he scowls and pouts. The Vest that beats him is definitely NOT his favorite time of day and he will use every wile he has to delay the procedure. The "special attention" factor wore off long ago. He just wants to be normal like his brother. And his brother want to have enzymes!
CF results also in low weight and energy in spurts, not consistent. He has a doctor appointment this afternoon at the CF Foundation at Children's Hospital. They will put him through more tests and back on extreme treatments. He will bear it. It will mean about an hour more worth of treatment, both AM and PM, which will result in limited activities and outings. But he will bear it. He will do a craft while hooked up to the machines. He will watch TV and write his numbers and words. He will work on the computer. And he will long for the day when a cure is found and he can be normal for the first time in his life!
He cannot play outside in the wind. He cannot play in the dust or in the garden. He cannot run and get overly heated. He cannot go nose to nose with an animal, or even sit in the same spot as the dog! He cannot play team sports, especially outside, but even inside, as if he has a cough, he will have to let his teammates down and sit on the sidelines. He cannot have a spontaneous snack, unless he has enzymes with him. (we keep them everywhere!) And sometimes he has to explain them to curious peers. He mostly won't though and just walks off with his head down, or pops them in his mouth and ignores the other children.
Ty is a fast runner. He loves gymnastics and building things. But he gets tired of his treatments. Often I find the mask of the SVN machine hanging from his chin rather than on his mouth. He will put it back up when told, but he scowls and pouts. The Vest that beats him is definitely NOT his favorite time of day and he will use every wile he has to delay the procedure. The "special attention" factor wore off long ago. He just wants to be normal like his brother. And his brother want to have enzymes!
CF results also in low weight and energy in spurts, not consistent. He has a doctor appointment this afternoon at the CF Foundation at Children's Hospital. They will put him through more tests and back on extreme treatments. He will bear it. It will mean about an hour more worth of treatment, both AM and PM, which will result in limited activities and outings. But he will bear it. He will do a craft while hooked up to the machines. He will watch TV and write his numbers and words. He will work on the computer. And he will long for the day when a cure is found and he can be normal for the first time in his life!
Monday, May 19, 2008
Miss Chief conquers Mischief!
Well!! Grandma is the Big Miss Chief today! This had to happen as the boys are becoming geniuses at getting into mischief! They are only staying a few hours today here at my house because I had the awesome fun of a colonoscopy this AM. Baby Girl had a necessary DR. appt. that could not be conviently changed, so the boys are here while Dad takes her to the doc. Mom took me to the doc this AM, so she hussled on to work. IT IS HOT outside today. The computer says its 104, but in the sun, it is probably hotter. The back yard shade starts in a couple of hours. Grandpa got the pool up, but I am not about to open that back door!
SOOO-the boys are watching TV and coloring. That is all they are allowed, due to difficulty in the listening department during lunch. I probably did sound like a big chief barking orders, but that is what medical sedation can do to you. Anyway, it seems to have worked, as they are much quieter.
They spent the entire weekend with us anyway. We did not make it to the movies but we did have a lot of fun in the backyard, between the pool, slip-n-slide, swing set/gym, playhouse, and dogs. We also made cookies and more picture frame crafts.
Baby Girl is taking steps now. She is up to about 4 now. And she can stand up all by herself. It won't be long until my status as Big "Miss" Chief will be challenged, I do perceive!
SOOO-the boys are watching TV and coloring. That is all they are allowed, due to difficulty in the listening department during lunch. I probably did sound like a big chief barking orders, but that is what medical sedation can do to you. Anyway, it seems to have worked, as they are much quieter.
They spent the entire weekend with us anyway. We did not make it to the movies but we did have a lot of fun in the backyard, between the pool, slip-n-slide, swing set/gym, playhouse, and dogs. We also made cookies and more picture frame crafts.
Baby Girl is taking steps now. She is up to about 4 now. And she can stand up all by herself. It won't be long until my status as Big "Miss" Chief will be challenged, I do perceive!
Friday, May 16, 2008
Its the potty breaks I miss the most!
Ahh, the sweet memories of the days when I could saunter across the hallway or around the corner and hide in a cozy one-seater bathroom. I could turn the light on or leave it off. I could think, read, pray, cry, and do whatever other business I needed to in peace and privacy. NOT SO ANY MORE!!!
I try shutting the door and locking it. BANG! BANG! "Grandmaaaaa!" Rarely fails. I try sneaking in quietly and leaving the door open just a crack so I can be on guard for invasion. Sure enough! Someone from somewhere undetected flings the door wide and then runs like crazy.
Sometimes I ignore the BANG BANG. But soon it sounds like World War III on the other side of the door! Or wailing loud enough to make me think I will need to call 911.
There are a few times when I can escape into the "rest" room, but I usually have to have Baby Girl tag along to assure that she will not be a casualty of war. She has an infactuation with the little round covers that fit over the bolts on the commode! First thing she grabs and if I am not quick to remove the item, it will head straight for her mouth! YUCKY!!!! Even though it is probably relatively clean, I cannot handle the thought of her sweet lips touching it, not to mention the possibility that she could choke!
So, for now, I shall fondly recall the days of yesteryear, and try to think of creative ways to be sneaky...so I can take that "rest".
I try shutting the door and locking it. BANG! BANG! "Grandmaaaaa!" Rarely fails. I try sneaking in quietly and leaving the door open just a crack so I can be on guard for invasion. Sure enough! Someone from somewhere undetected flings the door wide and then runs like crazy.
Sometimes I ignore the BANG BANG. But soon it sounds like World War III on the other side of the door! Or wailing loud enough to make me think I will need to call 911.
There are a few times when I can escape into the "rest" room, but I usually have to have Baby Girl tag along to assure that she will not be a casualty of war. She has an infactuation with the little round covers that fit over the bolts on the commode! First thing she grabs and if I am not quick to remove the item, it will head straight for her mouth! YUCKY!!!! Even though it is probably relatively clean, I cannot handle the thought of her sweet lips touching it, not to mention the possibility that she could choke!
So, for now, I shall fondly recall the days of yesteryear, and try to think of creative ways to be sneaky...so I can take that "rest".
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