Graduation and Vacation

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!

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!!!

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.

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.

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!

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!

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".

Zoo, glue, and you!!!

Well, this week has been somewhat back to "normal", if one could ever say anything was normal around here! LOL! Yesterday we made wooden picture frame mosaics. I bought the frames at Dollar Tree and then we went on a scavenger hunt through the house, for odds and ends of small items to hot glue on the frames like a mosaic. Caleb chose some colored paper clips, a heart shaped and a star shaped foam bead, a CAR eraser, 2 game pieces from a no-longer-of-interest game, and plastic beads that spelled out his name. He proceded to paint the frame yellow and red, which appear to be his favorite colors. Then I helped hot glue the items on his frame while he "directed" the design (with a little direction from gramdma). Tyler chose a simpler plan. He left his frame the natural wood color and chose eight AA and one AAA batteries to glue on the frame. He also chose some colored paper clips, and two pennies. If you knew him, you would know that each of those fits him to a T. Unfortunately, I found out later, that the batteries were NOT dead, as Ty had claimed! Oh well.

Anyway, Mom & Dad were very surprised and happy to find the frames, complete with a picture of each boy (Caleb wearing a king's crown we had made and Ty with a paint brush when we made his reading car)just before they left to go on a "date night". Grandpa Steve joined us for the evening. He fixed the free computer we got so Ty can do his Hooked on Phonics program on it. Yeah!

By late morning, we decided to go to the zoo. It is less than 10 miles from here and we have annual passes, so we can go just about any time. The petting zoo part has a sweet baby llama who followed us around along with many baby goats and their mommies. The giraffe was very cooperative about eating out of our hands this time and I got some great pictures. The tortoise had his lunch all over his face. The meerkat smirked us when I pulled out my camera. He literally turned the other direction three times! Little twerp!

Baby Girl rode on the merry-go-round, as did the boys, but she really got tickled at it. We went on the boat too, but even with an overcast day, the seats were too hot for comfort! Ouch!

Well, the kids are going to be spending the weekend with us while Mom & Dad get to go on a trip to Mexico! We are going to the movies and swimming, etc. I shall be thoroughly tired by Monday! Yikes!

Aim for Manners, a million light years away!

I am fixing Baby Girl's food. I hear giggles and laughter at the table. I turn. The boys are eating mac and cheese and staring at each other. I return to the task at hand. I hear impish laughter. I glance at the boys. They are starting to sip their Capri Sun drinks. Continue with preparing Baby Girl's plate. Now there is howling laughter escalating and gurggling sounds that concern me. I turn. Caleb has mac and cheese almost squarely in the middle of his forehead. And on his ear. Ty has it all over the placemat. (at least I had a placemat!) And on his head. Right on the very top! Who knew that Kraft Macaroni and Cheese could fit so nicely into the tiny straws of Capri Sun drinks as to become the ammunition for pea-shooters, spit-guns, or whatever they may be called these days! Wow! Maybe I should report this to the companies. Maybe we could make a commercial!

Baby Girl is cutting a one-year molar. Those are difficult to break through, apparently. At least she is sleeping a lot. Oh yes, she also was a target of the mac & cheese war, and quite frankly, seemed to rather enjoy it! It won't be long until she will be a willing participant and possible instigator. It's funny how when I was MOM that would have been a terrible disaster. As GRANDMA, it is just the creative investigations of grandchildren, resulting in the loss of their "Manners" stickers on the sticker chart, and a lesson in cleaning up your mess. And a lesson for Grandma related to not serving Capri Sun drinks with mushy food or unsupervised! I am getting quite a refresher course on children!

Had a friend from an area about 90 minutes from here visit today. She was going to bring her 3 yr. old grandson, but that didn't work out, so we just enjoyed the day doing "normal" things. We visited MacDonalds for ice cream. Not so much because the boys "deserved" a treat, but because it was very windy today and they could not play outside. Ty's CF cannot be exposed to wind and dust, etc. And GRANDMA deserved the treat of visiting for awhile with her friend. SHE needed the boys to get some energy out on the indoor playground. Ty actually read two books to this friend. And we played Alphabet Bingo and Letters Go Fish! Grandma didn't win either game!

Happy Mother's Day

Wow! I haven't seen my grandchildren charges the whole weekend. It almost seems weird. I did attend the soccer game of my eldest, Andrew, and his team won! Yeah! His lovable brother, Jonathan, was there too, being sweet as usual. That was all yesterday...and then my other daughter called from overseas on Skype, with a webcam so I got to see my little Eli too! He started solid food and is rolling over both ways now! Got a tooth too! Wow!

Tomorrow evening we are getting together as a family for Mother's Day, except that my son has to help with Andrew's soccer practice which was not scheduled to be on Monday until Saturday. Oh well. I can't do Tuesday or Wednesday. My local daughter is out of town until tomorrow. Monday is her husband's birthday as well. So, we do what we can do and smile that at least we get to see each other regularly.

It will be quieter without Zach, but more peaceful without his mom. Life goes on.

At church today, the children gave out roses to all the moms (actually, all the ladies). It was nice and very cute. Children are the reason for MOther's Day in the first place! Hope yours was lovely.

Wow Another week!

Wow! Another week gone by! The atmosphere in the house is less than wonderful. I guess Zach's mom hasn't totally left the family, but now that is a bad thing. The turmoil created initially has grown until the tension is high. She needs to leave even though we all miss Zach. She hasn't been seen, just keeps calling and keeping things in crisis. The boys know something is greatly amiss, and grandma is spending even more time with them. That is good and that is bad.

Yesterday I thought I would give Ty a break from school and do my daughter a favor by catching up her laundry...6 loads worth! The boys were given several creative projects to busy themselves with while I worked. Caleb wanted to make a smaller version of Ty's reading car and began to paint a box accordingly. Ty wanted to paint with the rollers on the easel again. After preparing the floor, allowing the boys to strip down to their undies (the a/c is out upstairs and the laundry room is upstairs...thus justifying the prime time use of electricity) I proceeded to sort clothes and figure out their fancier-than-mine machine.

The boys took advantage of the underwear gig, painting their bodies all over! They looked like tatooed sailors! So, I had to carry them individually to the tub. It WAS rather creative thinking! (And, somewhat pretty) Fortunately, Baby Girl slept through all of it!

Earlier they had gotten soaked on purpose by me OUTSIDE...

Then we went to Macdonalds and on to a band concert for their cousin, Andrew. And then to Cold Stone Creamery for an undeserved treat...well, grandma does believe in mercy!!! Mom and Dad needed the evening alone to figure things out about the drama unfolding around us. Not sure how far they got on that score, but at least they had time to talk.

Caleb asked when Zach was returning. I told him he probably wasn't going to be in my care any more, but some day he would visit. That seemed to satisfy him for now. The problem is, I don't know if that is true or not. But I will deal with it another day.

Happy Days are here again!

Well, for a Monday, today was just great. The boys seem to have adjusted to the absence of Zach. They seem, however, to be getting bored and I am running out of ideas to keep them hopping. They like to cut and glue, and staple (not such a great idea for Caleb) and stamp and use glitter and tape and...you get the idea.

But when it comes to cleaning up these masterpieces, it takes some coaxing at times. But even when the clean-up becomes a game, the fun soon wears off. It seems that with the rising temperature outside, their attention span is decreasing.

The things that hold their attention are the things that can get them into serious trouble...like hitting golf balls, from daddy's friend's bag which was in the garage (where the boys are NOT supposed to be), onto the roof. OR making a new national lake in the back yard. OR giving the little car belonging to Baby Girl a good washing with a hose (while Baby Girl is riding in it!) OR carrying water from the kitchen sink to the patio with splashes all over the carpet and tile...

OR throwing toys over one wall to the neighbor kids and rocks over the other to see if there is a splash in the neighbor's pool. (I DO think we have THAT one finally conquered.)

Ty has a black eye from the party yesterday. It was the trampoline. There IS a reason why it says to jump "one at a time".

Caleb has a cut foot from today. Couldn't find his shoes. There IS a reason why Grandma said not to go outside without them! But, for a MONDAY...it was pretty good!

Tomorrow is MONDAY!!!

The last two Mondays have been dramatic in some ways, more because of the adults in my life than the kids. So, I don't know what to expect tomorrow. I ended up spending 6 hours with the kids on Saturday as well. And I let them run amok somewhat. I let them use the forbidden water hose to their little heart's content. I changed Caleb's clothes twice since he was "freezin'". It happened to be 90 degrees out with very little breeze. But when you are "freezin'" you are "freezin'".

We bought them each a 27" water shooter and some buckets too. It took very little time to drench the patio and ceiling thereof, as well as the side of the house and every place that could produce a mud lake. Water shooters and hoses are quite the creative playthings! One can be a firefighter, an astronaut, a bug killer, etc. Oh well. That's what the parents get for being gone for 6 hours on SATURDAY! (It was supposed to be 3 hours, but hey, things come up!) Well, things come up for grandmas too...

We were there today too, for a birthday party for a 2 year old family friend...not Zach...he's almost 3...But at least this time, I was not the "responsible adult". I think there were nearly as many adults this time as kids...maybe more. The noise level was exhausting! I planned to go shopping for my husband since our anniversary is Wednesday, but I fell asleep instead. Oh well. I still have Monday evening...if I survive Monday DAY!!

Connecting to the student

Well, things are interesting here...Tyler has just about finished his Reading house and car projects. This was an incentive to give him a reason to want to read. He is doing very well now. I was beginning to think that I could not teach properly, nor connect with this very unique child with Cystic Fibrosis. The treatments alone get very tiring and recently he was on additional time on the vest as well as additional SVN treatments. He is usually cooperative with his normal routine, but can get quite resistant with the extra requirements….these occur randomly at times, with one extra SVN scheduled every other month.

With his mandatory treatments, his parents, (my daughter and hubby) had tried to give him as many choices in other areas of life as possible. Unfortunately, just before I took on this job, they realized they had over done it. Tyler had decided he was in charge of most everything. So, the first few months consisted more of MY taking charge and getting him to show respect and settle down to focus.

He was okay with the science and math end of things, but decided he did not want to read. So, I had to come up with a plan…he loves to tape things together with duct tape! AND he loves boxes. So, the incentive became the reading house…first…earned by learning the letters, sounds, and then phonics, and words related to things in his house. As he studied he got to tape boxes together and make a house. As he began to read sentences like: “The wall is tan,” he could paint the wall tan, etc. The house is really quite detailed. We moved math into the project by making a microwave in need of a numbers panel, “ x “ amount of paint, and measuring for contact-paper flooring. We made actual quilts of 6-12 cloth squares, (thus including shapes) and painted the names of family members with fabric paint.

Then we moved on to the Reading Race Car made from a 50-gallon water heater box. Quite elaborate, if I do say so myself. It even has muslin material representing exhaust and a steering wheel that makes car sounds. The wheels are made from cloth Frisbees with jelly jar lids for hubcaps. Electrical tape makes great black racing stripes! Two flashlights inserted into holes in the front make excellent headlights. And the mesh bags containing the cloth Frisbees made a wonderful grill. He is the envy of his friends now. They want to know if they can come to his school next year. Yikes!!!

Today we made the car. Tyler has been working hard on his Hooked on Phonics program and has completed the home-school curriculum his mother purchased. He enjoyed painting while his brother played on the playground in my backyard. His reading house and now his car are in a large walk-in closet at his house. We decided to combine his "open house" and kindergarten graduation. As it looks now, we shall aim for May 23. Most public schools here get out either May 9 or 16, but we started in September, while they started in August. Ty a lready has his list of friends and relatives he wants to invite. He states however, that he is not reading for the whole crowd, but possibly for mom, dad, and grandparents. I suspect he may be persuaded to include a cousin or two.

It's Too Quiet...but I'm sure it's temporary

It is MUCH quieter around the place now. I guess I didn't fully realize Zach's lung capacity and his ability to influence the other boys to participate in loudness. Amazing how their listening skills have improved as well. But before I lay too much credit or blame on anyone, I must also face the fact that this is temporary. It will change. They will adjust to the calmness and irradicate it shortly, I am sure. But even Baby Girl has had fewer expressions of temper. WOW. Two year olds really do hold a lot of power apparently!

While enjoying a more peaceful day with the kids, the family turmoil that led to this change is wrenching my heart and emotions. And some things of the future are uncertain, for myself as well as other family members. Life sure "ain't" fair! It is interesting though, to observe younger people learn the "facts of life" the hard way. Eventually most of us conclude that we truly cannot control as much of life as we would like. Sometimes we actually let go of trying. If only we did not have to bear the consequences of other people's choices! If only life were about each of us daily separate from the pain of interaction! And the results of a world full of all kinds of pollutants.