Love/Hate

I have a love/hate relationship with machines. They can be so convenient and they are often times very necessary, but they can cause so much stress in my life!

Lately, our van has been making a loud noise. I know that it needs to be taken in to be looked at, but there never seems to be enough time, plus I always seem to need my van, so going without it while it's being fixed is a hard thing to do.

Then, there is Gavin's nebulizer machine. We have to use it on him once a day. And, there are some days that I really dread turning on this machine! It is so loud and it seems to take forever to administer the medication through it! Sometimes it just doesn't want to work well, and then we have to figure out what's wrong with it. So, it can be such a pain! BUT, it has also been a life-saver for Gavin at times, and it has enabled us to stay home, instead of having to have Gavin admitted into the hospital when he isn't breathing well...so I also LOVE this machine, despite the hassels it may cause!



Yesterday this following machine gave me a ton of trouble, and wasted at least an hour of my day! This is the machine that allows us to phone in Gavin's pacemaker settings to the hospital that is 2 1/2 hours away.



This machine is totally AWESOME! I am always amazed that I can just hook it up to our phone line, turn it on, then place a paddle over Gavin's pacemaker and it can send all kinds of info to the hospital! Totally blows my mind! And, the pacemaker itself is quite amazing as well! Gavin wouldn't be alive today without it! BUT...there are days when the call-in machine doesn't work, like yesterday. And, I was in such a great mood yesterday, and then this machine totally ruined my day!

I tried to get it to work 6-7 times and it just wouldn't send the info out! It would upload the pacemaker info, but it wouldn't dial out to the hospital. I was SO FRUSTRUATED! I called the hospital. I called the Medtronic company. Then after complaining to Joel about it, he reminded me that we had recently switched to a Digital service for our phone and cable lines. So, I called the cable company and they said that they have many people who have digital service, who also need to phone in pacemaker readings, and it works fine for them. (Which is NOT true, according to Medtronic.) So, I called the hospital again and they said that this machine doesn't work with a digital system, and none of their machines will. So, I called Medtronic and they said that we can pay $10 a month for a cellular service that connects to the machine and then it would work. They said that another cable company (AT&T) has a system that works with the machine, but that the company we have (Comcast) doesn't. So, I considered switching to AT&T, but then I remembered that they don't have service in our area yet! UGH!

So, for now I guess we pay $10 a month. The hospital said that we could use someone else's phone line to call in the monthly readings, but then we would have to pack Gavin and the machine up to go out and do it.....and I already have a hard enough time remembering to call in the reading and fitting it into our shedule! Plus, if there were an emergency, like if Gavin was short of breath or his heart rate was too low or sporadic, then we wouldn't be able to do an emergency call in reading, so $10 per month is worth it to me!

Then there is Gavin's feeding pump machine. This one is another life-saver! Gavin can't eat by mouth, so he NEEDS this machine! I love it, because it feeds my son, keeps him hydrated and alive.....BUT, anyone who has one of these machines will tell you what a pain it can be! The lines get occluded so often, and then the machine beeps! The bag tips over and then the line empties, and then the machine beeps! The pump senses that the bag is empty...even though it IS NOT empty, and then the machine beeps! The machine also seems to have a mind of it's own somedays, because absolutely NOTHING can be wrong with it and it BEEPS...BEEPS...BEEPS! About drives me crazy! (Of course, it started beeping while typing this post!) So, I love this machine, but I also hate it!




The following picture is of Gavin's G-tube.....another life-saver! This is where we hook up the feeding tube to Gavin's stomach. It is an awesome invention.....But, of course it's like a machine, in that it can cause troubles as well. It sometimes gets twisted and comes off, which makes a nice mess for me and Gavin! And, it can get pulled out if it's pulled on with any force.....Gavin likes to get a hold of it many times in a day, but thankfully it's only gotten pulled out a few times.

FYI: If you want to know where Gavin's pacemaker is, look at this picture and you will see a diagonal scar on the left side of his abdomen. The pacemaker is inserted just under that scar. A pacemaker usually is placed into a person's chest, but with a baby, they put it in the abdomen. You can also see many other scars that Gavin has accumulated over the years. He has been such a trooper!



Here is a picture that I found when I was looking for the pictures above. I took these about 2 1/2 years ago. Look at Gavin around this time. He was so chunky back then! But, WAY CUTE, if you ask me!



And finally, I love my computer, but I think I hate it just as much! I love that I have been able to meet some wonderful people, and to form a support system that I wouldn't have otherwise. I love the ability to keep in touch with others and look up info quickly, but it is SO SLOW and takes so much patience from me.....Patience that I can't afford to lose, since it seems I'm constantly spending mine on 4 boys each day! :)

Machines.....Can't live with them, Can't live without them!.....Truly a love/hate relationship!


"To everything there is a season, A time for every purpose under heaven:
A time to be born, And a time to die; A time to plant, And a time to pluck what is planted; A time to kill, And a time to heal; A time to break down, And a time to build up; A time to weep, And a time to laugh; A time to mourn, And a time to dance;
A time to cast away stones, And a time to gather stones; A time to embrace, And a time to refrain from embracing; A time to gain, And a time to lose; A time to keep,
And a time to throw away; A time to tear, And a time to sew; A time to keep silence,
And a time to speak; A time to LOVE, And a time to HATE; A time of war, And a time of peace." Ecclesiastes 3:1-8

What's Wrong?

Our oldest is home from school sick today. He has a sore throat, a head and neck ache, and he feels tired and achey. How do I know that Jacob feels this way?.....Because he told me so.

Last Thursday, I sent Gavin off to school on the bus. That morning he was a happy little guy and he seemed happy to get on the bus too. I was looking forward to getting some laundry done, and then I was planning to head to the store for some groceries. About an hour after he left our house, I received a phone call from his teacher. She said, "Gavin isn't his happy self. He cried all the way to school and he's been crying ever since he got off the bus. I thought you would want to know that something is going on. I checked his tube to make sure it wasn't pulling. We took his temperature. I looked him over for anything that might be hurting him or bugging him, but we can't find anything that could be wrong." I heard him sobbing over the phone, and this broke my heart!

I asked if she had tried taking off his shoes, because sometimes his toes get curled up in them, so she took off his shoes, and he stopped crying! She said, "Maybe that was what was wrong with him. I'll call you later if he starts crying again." About 10 minutes later, she called me back to tell me that he had fallen asleep and that all was well. So, I went about doing my chores and getting ready to go to the store. Ten minutes later, she called back to say, "He's awake and he's NOT happy!" She said that she was very willing to keep him there, but wanted to know if I wanted him to ride the bus home, if he continued to cry. I told her that I would be there in 20 minutes, and I left to bring Gavin back home.

When I got there, he was no longer crying, but he looked really sad and as if he'd been through a rough day! I went over to him and he sighed, gave me a little smile and started "talking" to me. I was so happy to see that he was alright, but I was wondering.....Why had he been so upset?!



It's so frustruating when you can't ask your 4 year old what is going on with him! He obviously had a reason for crying, but what was it?



Did he just need his Momma?



Because after I picked him up from school, he was his normal happy self! And, he has remained quite happy since that day!



Gavin isn't one to cry. He is a calm, and easy-going boy....until you put something in his mouth or get him wet anyway! Then watch out.....he will let you know he's not happy!



He does cry when he is scared or startled by something, but he is used to school and really likes being there. And, he does cry when something neurologically is going on with him. But, usually we know that something is off, because he has a seizure or he jerks, or he is really out of it....and after this he cries from whatever was going on. Maybe this was the problem, but they didn't see any of this going on. So, Gavin had us guessing, "What's wrong with him?"



When I was driving to school to pick him up, I thought for sure that something was really wrong. I worried the whole way to school. I wondered if he was hurting, or was he getting sick.....I hate not being able to ask him what is wrong! There is a lot of guess work when you have a child like Gavin.....But, thankfully I rarely have to guess what is wrong with him, because he's usually a happy guy!



I wish that Gavin could talk to me, like his big brothers are able to talk to me. But, since he can't, and since he isn't likely to ever talk, I guess we will never know why he had such a bad day at school that day.....and this makes me do a lot of pondering, and it also makes me feel a little bit sad.

Maybe Gavin just wanted to spend some time with his Momma.....?

If that was the case, I was happy to oblige him and I will always be happy to spend the afternoon with him! Besides.....I wasn't really looking forward to doing the laundry and getting groceries anyway! :)


"Let your eyes look straight ahead, and your eyelids look right before you. Ponder the path of your feet, and let all your ways be established." Proverbs 4:25-26

My 'Son'shine

Whether Gavin is just looking out the snow covered windows,




Staring off into his own little world,



Just hangin' out,




Looking shy and sweet,




"Talking" to us,




"Singing" to us,




Laughing,




Or, giving us one of his award winning smiles:







Whatever Gavin is doing, he helps to bring the sun out for me every single day that I get to spend with him! He is my 'son'shine!

And, if that weren't enough to put a smile on my face, check out the cute Converse sneakers that I got for only $5, for him to wear!





Colorful Dr. Suess shoes, Gavin, and God's love & promises.....What more could this Momma possibly need to put a smile on her face?! I think today is going to be a great day!


"To Him who made great lights, for His mercy endures forever-
The sun to rule by day, For His mercy endures forever;
The moon and stars to rule by night, For His mercy endures forever." Psalm 136:7-9

Looking back.....

WARNING: This is a long one! But, if you want a recap of some of what Gavin has gone through in his life.....Read on! It has a happy ending! :)


This past Saturday, January 15, marked two anniversaries for our family. January 15 will always be a day that our family will never forget. Looking back on this day is bittersweet.

The first anniversary is of Joel's Dad's death. This past Saturday marked 11 years since he has been gone from us. When I look back to the day he died, I remember that I had just given birth to Nolan, 2 weeks before. It was a bittersweet time. I was so in love with my newborn and was flying high with having a new baby to love, but it was an emotional time for our family because Joel's Dad was far away in a hospital waiting for a transplant. Joel flew out to see him twice after Nolan was born...he was there to see him just hours before he died. It's sad not having Dan here with us, to this day....but when we think about him, there is always a smile brought to our faces! He was quite the guy!

The second anniversary is of Gavin's 1st, of several, heart surgeries. Saturday marked 4 years since that stressful day. Gavin was supposed to have had this surgery 2 times before this day, but he had an infection both times, so they had to be canceled. It was kind of scary knowing that Gavin was going to have surgery on the anniversary of Dan's death. We were told how difficult this surgery was going to be and that Gavin's condition, going into surgery, was very poor. The doctors had no choice but to do surgery on him, but the conditions were not good for operating on Gavin. It was unspoken between us, but I'm sure that many of us were worried that we might have 2 deaths to remember on this day.

Here is a picture of Gavin waiting to have surgery. He had been in the hospital for several weeks, on a ventilator, because his lungs were such a mess due to pneumonia and high pulmonary pressures. He started out at a hospital near our home, and then was flown by helicopter to the hospital that was going to do his cardiac surgery.



(I miss that scar-free chest, that was without the huge lump of a sternum, that he has now. :( Because Gavin's sternum bone had to be opened up so many times in a short period of time, his sternum is raised up A LOT, and it even shows through when he is wearing a shirt! But, that scar and bone are certainly a reminder to us, of what our warrior boy has had to go through in his short life!)

The surgeon that was going to do Gavin's surgery is one of the best! But, even with all of his experience and successes, we were told that Gavin's case would be a very difficult one for him to do.....and that they were even planning for the worst. Can you imagine how hard it was to let them take him back to surgery?! I was so scared!

This is why we were fearful that Gavin might share the same day of death with his Grandpa. Gavin was named after Dan, since his middle name is Daniel.....but I am so thankful that they didn't have to share something else in common as well!

This is Gavin after surgery:



He was totally sedated and hooked up to TONS of lines, tubing, pumps and meds those days after the surgery, but he WAS ALIVE! Several doctors told us that they "went in expecting the worst, but they came out with the best result that they had hoped for!" We were on cloud nine those first few days after the surgery!

Here is a picture of all our boys, on one of the many visits they had to make to see their little brother in the hospital:



Of course, Gavin decided to keep them on their toes, because the next few months proved to be totally opposite from the best case scenerio! Here is a short recap:

Gavin needed 2 more open-heart surgeries, because one of the valves that they repaired had broken open again, and then his heart went into second degree heart block, so he needed to have a pacemaker put in. Also, Gavin's lungs were such a mess that he could not be taken off the ventilator, despite many trials and meds to help him to get off from it. He also coded a couple of times during this time, and we were certain that there was no way he would ever get home again, and if he did, it would be with a trach and a ventilator. Long story short...by the grace of God, Gavin surprised us all by successfully getting off the ventilator, despite how horrible his lungs were, and despite having the severe leak that he had (and still has today) in his Mitral valve! It was truly a miracle!

Here is a picture of Gavin, with him off the ventilator and doing physical therapy in the hospital.



Even though Gavin was able to be extubated, he still had a long way to go! Because we were a couple of hours from our home and I was missing my other boys terribly, (since I could only see them on some weekends when they came to visit during that 3 1/2 month stay at this hospital), the doctors decided that Gavin was stable enough to fly back to the hospital that was closer to our home. This was such a happy day for us!

Didn't Gavin look happy about this?!



Little did we know that this crazy roller-coaster ride was far from over! Once he was admitted back to the other hospital, they did all their tests on him again and they told us that he and his lungs "were a mess!" The other hospital we had just left were so excited by the progress that Gavin had made and they were so hopeful for his recovery! And, so were we!

It was quite a blow to us, to hear how badly the doctors at this hospital thought he was doing! They decided to change up a ton of his meds and put him on HIGH doses of dieuretics, plus antibiotics. This is where our new roller-coaster began!

We had planned on getting home within a week or so, but it didn't turn out this way! The next month did not go well at all!

This is when Gavin came down with C-Diff, from all the antibiotics he had been on, and this is when he was constantly having diarrhea from the C-diff. (Like 30 diapers a day!), and despite all this loss of hydration due to the C-Diff, they continued to give him all those dieuretics! His body was being so depleted of much needed fluids and they did nothing to stop this! In fact, they didn't even have him on an I.V. at this time, because they said his lungs were so full of fluid and he couldn't handle additional fluid intake. I told them that I understood that his lungs were full of fluid, but the rest of his body SURE WASN'T! He was losing weight and he was extremely irritable and couldn't sleep at all. It was a nightmare that I think of once and awhile, and I wish that I could go back to again....so that I could change all of what happened!

I was pleading with them to help my son! I knew he was not doing well and I begged them to put him on I.V. fluids. They told me that I "was just a Mom" and that they knew what they were doing. Finally, after a couple of days of this, one doctor listened to me and put him on I.V. fluids....at 10cc an hour!....like that was going to make any difference! But, it was too late anyway.

Long story short: Gavin had a stroke, also called a hypoxic brain injury. It was due to him being so severely dehydrated, and he probably also had a very low blood sugar! It landed him back in the ICU, and on a ventilator again!

This one mistake has forever changed his, and our life! The stroke affected his entire brain!.....(Permanent damage). The CT scan showed that he should not have even been alive!

Gavin spent another month in the hospital, and the only reason they sent him home was because I told them that I could probably take better care of him at home, than what they were doing in the hospital! They were very against sending him home, but I insisted that since I had a nursing degree, Gavin would be in capable hands and that they didn't get to make choices for him any longer....because they had messed up.....Big time!

Here is a picture of Gavin the month that he came home.....after 4 1/2 months in the hospital. (We were told to expect 10-14 days! I'd say that was a very long 10-14 days!!!) To this day, this is one of my favorite pictures of Gavin! I think it's because he was finally home with all of his loving family! Oh, and he looks really cute in it too! :)



Of course, Gavin began having seizures after the stroke, and his lungs continued to be a mess! He was on so many medications and we were constantly going to one of his 12 doctors! He also ended up in the hospital more times than I can count, and I really had a difficult time trusting any doctors or nurses that cared for him there, after all that had happened!

But, look at my guy today!



He is doing so well and exceeding all of his doctor's expectations! He will always suffer from the stroke that he had, and his heart still needs some repair, but he is ALIVE! And, he is the light of our family! God has taken such great care of Gavin and, such great care of our family! I don't know why all of this happened to Gavin, but I do know that we are all better people because of it! Gavin, and all of our trials, have truly been a blessing! Life and God are truly Good!


"Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us." Romans 5:1-5

Blessed 39th Birthday!

Wednesday was my birthday.....I turned 39. I don't know how this is possible! I seriously don't feel 39 years old. And, when I think about how young my parents seem, I wonder how it's possible for them to have a 39 year old?! Mentally, I feel about 25. So, I guess that's a good thing. But, the calendar says that I'm 39?! This just can't be right!

I had a wonderful and busy birthday! Our family had a lot to do that day.....piano lessons, cadets, taking an easy and fast meal over to Joel's uncle's house, who's wife recently passed away.....plus all the other daily duties that our busy family always seems to have! So, it was a fast-paced day, but a day that filled my heart up tremendously!

I received many loved-filled phone calls from friends and family. I was taken to lunch by my loving Mother, who surprised me with a table full of friendly faces, once I arrived to the restaurant! I was able to celebrate my day with my Mom, a favorite aunt, a favorite cousin, and her precious daughters, a wonderful friend and my sister (who drove in to see me on my day!) and the best surprise of all.....

.....this little man! (My nephew Tate!)



Yep, he was the highlight of my day! I mean, just look at that face! He is such a delight and so snuggable!

Oh, and a wonderful friend of ours stopped by our house to say Hi, and to give me a card and gift!

I seriously felt loved that day!

Of course, I was also able to spend it with Joel and my boys! I really don't think that my day could have been better....well, time to breathe and really savor the people in my life would have been nice, but really.....it was almost the perfect day!

Here are a few more pictures of all the love that surrounded me!











I'm pretty sure that it doesn't get much better than this! :)

Although.....when I woke up the morning of my 39th birthday, I did think about my life thus far. I wondered, "Have I accomplished much? Have I done enough in my 39 years?" Unfortunately, I felt the answer to my question was, "No". I know that I've had a full life so far, and I know that I've done a lot and accomplished a lot, but it just doesn't feel like enough!

So, I decided to sign up to be on the bone marrow registry list, so I filled out the online registration that day. I will receieve a kit in the mail soon. Having done just this one simple thing has helped me to feel like I'm doing a little something for this world and others.

In my 39 years I've been a daughter, a sister, a friend, a wife, a mother. I've graduted from several schools, and I've earned a nurse's degree. (Sometimes I think that I should be using this degree...but then I remember that I actually am, Thanks to Gavin!) I've been a Sunday school teacher., I've tried to share my faith and love with others., And I've made tons of mistakes that I've been able to grow from. I guess I've had a fairly full 39 years.....I just feel like there is so much more that I should be doing.

I guess I will have to do some soul searching and figure out what else I am supposed to do with the next 39 years.

One thing that I do know, right now I have the best job on this earth....that of being a Mom! Being a Mom is the most rewarding, yet unrewarding job that there is! It's the hardest job, yet the easiest job that there is! It's one of the most responsibilty-laden jobs that one could possibly have....especially when one of your children is as dependent on you, as Gavin is on me! It's a low paying job, but it's also the highest paid job! (Receiving hugs, kisses, smiles and laughs is the best pay out there!) And, feeling a sense of pride that comes from being a Mother, can't be compared to any other feeling of proudness out there!

When I look at my life in these terms.....I realize that I've done quite a bit in my 39 years! And, I pray that my next 39 years are filled with the same blessings as the first 39 years! Life is, and has been, VERY GOOD to me!

Thank you to all of you who have filled my years with so much! Love and Hugs to all of you! :)


"I know that You can do everything, and that no purpose of Yours can be withheld from You." Job 42:2