Friday, July 30, 2010

Better Days!

We are back in the swing of things around here. As you know, we came home to some disturbing things, after our time away on vacation. I am thankful to say that everything is mostly back to usual and working again!

The car is fixed.
The dryer is fixed.
The tree limbs are picked up.
The pool is miraculously no longer looking like pea soup.
The laundry is done.
And, the trampoline is still bent, but useable.

And, it actually feels good to be home again! I love going away on vacation and it's hard to return home again, but home really is the place to be! It is much easier caring for Gavin at home and it's not so exhausting, as vacations can be.

I did have a couple of things that I brought along on our trip that proved to be very valuable to Gavin while we were away.

About a month ago I showed you an item that I purchased for Gavin. At that time I also bought a couple other items for Gavin to use and they worked great for him on our vacation! The company that I bought these items from is not tailored for special needs kiddos, but I have found some things that would work great for those with special needs. So, I thought that I would share them with you.

The first item is great for kiddos who don't tolerate heat as well as they should be able to. Gavin fits into this category. He overheats very easily! He doesn't sweat as well as he should and he gets flushed very easily and becomes almost limp when too hot. Becoming too hot can also bring on seizures for those who suffer from them. Since we were going to be out in the elements a lot on our vacation, I knew that he was going to need something to stay cool. So, I bought this cool fan for him to use:



It clips onto almost anything and runs on AA batteries. It works very well, except it goes through batteries quite fast....but it's worth it, if you ask me!

We were in areas where it got up to 102 degrees outside, so having this fan, plus the wet washcloth that I carried around in a baggie for Gavin to cool off with, were invaluable to him!

Here he is staying cool with this great little fan:




I learned that I should have bought about 100 of them, because EVERYWHERE we went people were drooling over Gavin's fan! I probably could have sold enough of them to pay for most of our trip! One guy even offered me $200 for it! I told him that Gavin was worth much more than that!

The other item that was very useful to us was this cot:



It folds up quite small in it's own carrying case and it pops up so easily for use! We used it for Gavin to sleep on and also for him to hang out on, since he is unable to sit up on his own. It's long enough that our son Caleb can even lie on it, so it will last a long time for Gavin. Here is Caleb and Gavin together on it:



Aren't they cute together?!

I thought that some of you might be interested in these products, so there you go!

On our trip I also learned, realized or thought of a couple of things:

1) Someone should invent a floor to ceiling window to be used in the back of a mini-van!
You know, like the windows they have in Limos. I would have enjoyed our trip even more than I did if I didn't have to hear Caleb and Nolan arguing, making annoying noises and asking us if we were almost there a trillion times! It would have been so nice to just roll up the clear window and have some peace and quiet! I truly LOVE these 2 boys, but traveling with these 2 active boys for over 1200 miles in a van is just about too much stimulation for this Momma!

2) Us Mommas have to improvise a lot!

a. I ran out of wipes for changing Gavin's diaper at one point on our trip and I found out that wet napkins will work in a pinch!

b. I also learned that I can actually change Gavin's diaper AND clothes while holding him and standing up at the same time! I was in a bathroom stall and there was no changing table....which he no longer fits on anyway, but it works if it's really needed....and I had to change his diaper and clothes because his tube leaked from his feeding pump and he was a mess! I wasn't about to lay him on that gross floor, so I just held him in my arms and proceeded to change him this way! It was very difficult to do and I came out of the bathroom with a sore neck and back and I was sweating like a hog, but I DID IT! I told Joel and the boys that I didn't want to hear them say "I can't!" ever again! If I could manage this feat, then just about anything is possible!

c. One last place I had to improvise was at King's Island. Joel and the older boys were riding the bigger rollercoasters and I was with Caleb and Gavin. I wanted to be able to take Caleb on a ride that Gavin could also go on, so we headed to a kiddie haunted house. It was inside and air conditioned, plus you got to sit in a cart that wheeled you around the "scary mansion". I thought it would be a perfect ride for the 3 of us to enjoy together. So, we waited in line for at least 15 minutes, with me carrying Gavin AND his feeding pump and my purse, because strollers weren't allowed....another time that killed my back and neck!.....and when we got up to the front of the line, they told me that Gavin couldn't ride because he didn't have socks or shoes on his feet! I would not have cared, except there was a guy at the entrance of the ride and I thought that it would have been nice of him to tell me this before I stood in line for 15 minutes, holding a 30 pound child plus the other items! UGH! I asked if they could make an exception, because I didn't even have shoes or socks for Gavin that day, because it was so hot and Gavin can't even stand up anyway! They said "No Way!" I was quite irritated by this! I had just stood in line with 2 children and I didn't want to let Caleb down either. So, I asked to speak with a manager, who told me that they sold socks in a gift shop for 8-9 dollars and then I said, "NO WAY!", plus I didn't want to wait in line for another 15 minutes, once we bought the socks. I was seriously about to cry when my Momma improvising skills clicked on and I was able to come up with a great idea! I told Caleb to take off his socks and shoes, and then to give me his socks. I had him go sockless in his shoes and had Gavin wear Caleb's socks! They were HUGE on Gavin, but this satisfied the attendant, so the problem was solved! WHEW!

Here is a picture of Caleb and Gavin in front of the haunted house:



Even though it took a lot out of this Momma to ride this ride, it ended up being worth it! Caleb loved it because he got to shoot a laser gun at the ghosts. Gavin loved it because it was air conditioned and it was dark inside with bright lights and noises that made him happy. And, I loved it because it made my boys happy!

Here is a picture of all our boys together while on vacation.....they were snuggled up on the couch before bedtime and behaving so sweetly.....which doesn't happen a whole lot of the time around here!



We had a great time away and I hated to come home again, but now that we are home I am loving it!.....Probably because even though life is almost always exhausting with our bunch, it sure is less exhausting at home, than when traveling with all of them!


"And we know that all things work together for good to those who love God, to those who are called according to His purpose." Romans 8:28

Monday, July 26, 2010

GOOD GRIEF!!!

We just returned from a 10 day, whirlwind vacation. We drove over 1200 miles, throughout 4 states. We slept in 5 different places, visited family and took in 5 different attractions and saw many beautiful sights. We had a WONDERFUL time, but we probably overdid ourselves. Since we stayed at 5 different places, it feels like we were constantly packing up and unpacking.....and we have a lot of stuff with 4 boys.....one of them being Gavin! So, while we were refreshed by all the fun, we are also exhausted from all that it takes to travel with our bunch!

I don't know about you, but coming home from a vacation always gives me a feeling of saddness. You work so hard planning, packing, traveling and it goes so fast and then you are home again.....way too soon! This is how I'm feeling today. I feel so blessed to have been given this time away, but now I dread getting back into "the real world." There is TONS of laundry, unpacking, cooking, cleaning, shopping.....UGH!

Not only these things to deal with though. We came home to some other depressing things as well:

Joel's car has a brake line leak!

Our dryer was broken!

Our pool's water, that we put so much work into getting it up and running, is totally green and may never get back to normal again, without having to drain it!



There was a big storm while we were gone, and it left us a mess.....lots of branches and twigs are down to clean up!



This storm that hit also totally flipped our trampoline over onto the netting side and the poles are bent and maybe unrepairable!



And, while we were away our dog scared my Mom by having ticks found on him....she got them off, so hopefully he doesn't get sick from them!



"GOOD GRIEF!!!"



(Picture taken at King's Island.....they have Peanuts characters there, which we love!)

After coming home to all of these wonderful surprises, I am totally understanding why Charlie Brown always says, "Good Grief!"

This Momma is feeling let down and depressed, has a negative attitude, and is in need of an attitude adjustment.........or maybe just another vacation!!!

I'll share more pictures and details once I get back in the swing of things. GRRR!


"Even in laughter the heart may sorrow, and the end of mirth may be grief." Proverbs 14:13

Friday, July 16, 2010

He's so loved.....

I get to spend lots of time with Gavin. I am almost always with him, unless he is at school or I get a rare time away from home. I love spending time with Gavin! As I've said before, he makes me so happy and I can't get enough of him!

Gavin has other people in his life that love him lots too, like his Daddy and his big brothers. They don't get as much time with Gavin as I do, but they love giving him attention when they are around.

Here are some pictures of Gavin being loved on by them:

"Daddy, you are so funny!"



Jacob almost always asks to hold Gavin if he is sitting down in the Living room. Sometimes Jake and I even fight over who gets to hold Gavin!




Big brother Caleb is lots of fun to play with! He makes lots of silly noises that Gavin loves to hear, plus Caleb is very active so when he's around, there is no way Gavin could ever be bored!



Nolan is a very sensitive big brother to Gavin. He is the one that I can count on to come running if he hears Gavin gagging. He likes to make sure Gavin is comfortable and happy. Nolan is also good at singing silly songs to Gavin.





And, back to Jake.....I really don't know how I'd do all of this care for Gavin, without Jacob?! He is old enough for me to trust him to watch Gavin for a couple of hours and he is almost always there to lend a hand if I need something for Gavin. Plus, he seriously loves Gavin.....maybe even as much as I do! He says that Gavin is his favorite person in the whole world and one of his best friends!






Gavin is so very loved!

Gavin will get lots of time to be with all of his family for the next week and a half! We are headed out tonight for a 10 day, whirlwind vacation. We are making 5 stops.....first to see relatives and then to see and do lots of fun things!

This Momma is very tired from the craziness of this week.....2 doctor appointments, a blood draw and X-ray for Gavin, a trip to the vet, 2 trips to the bank, paying bills, trip to the pharmacy twice, grocery shopping.....and lots of laundry, packing and planning! I am so looking forward to this get-a-way.....I just hope that I can keep my eyes open to enjoy the fun! :)

I just went up to check on Gavin and this is how I found him! I guess he is worn out from all of the activity of this past week too! :)



I'd love to lay down beside him and take a short nap,but more packing is calling my name..........

Hope all of you have a great week! I plan to, once I get a long nap in the car...on our way to fun, adventures and relaxation....if that exists when you are traveling with 4 boys! :)


"Let brotherly love continue. Do not forget to entertain strangers, for by so doing some have unwittingly entertained angels." Hebrews 13:1-2

Thursday, July 15, 2010

Gavin's Wish

Our family has been thinking lots about what wish Gavin would like granted from Make-A-Wish. This is harder than it seems. The wish is supposed to be for Gavin, but since he can't talk or do much of anything, it's difficult to decide what he would like.

Then it came to me today..............

after looking at the following pictures....................






The one wish that I KNOW Gavin would make for himself....................

To "NEVER BE PUT IN WATER EVER AGAIN!!!"

He's been telling us this all along, we just haven't been listening to him!

I told him that Make-A-Wish doesn't grant every wish that is placed, and I'm quite sure that this is one wish that would be denied. Gavin wasn't happy with this information!

Poor Gavin!

So, as the pictures prove, Gavin still isn't enjoying water or the pool. But, this Momma is holding out for success some day!

And, here are a few pictures of Gavin in his wheelchair, getting ready to get on the bus for school. I thought that I should leave you with the happy face that we usually see around here!





At least Gavin likes riding the bus and going to school! It's probably because he knows that they won't be putting him in any water when he's there! :)


"O God, You are my God; early I will seek You; my soul thirsts for You; my flesh longs for You in a dry and thirsty land where there is no water." Psalm 63:1

Friday, July 9, 2010

The dam has broken loose.....once again!

Lately I haven't been getting much sleep, I have lots going on in my life, I have so much to do in a day and I have no desire to do any of it, I feel lost in this great big world, I wonder why some people's lives "appear" to be so great and mine has been filled with so many ups and downs.....I am not really depressed, just feeling overwhelmed and a little bit pitiful. I thought that I was handling everything just fine, but then I visited a blog site of a 26 year old girl who has Down syndrome and I lost it!

I looked at this girl on the computer screen and I saw her big smile and I saw her interacting with her family and walking and taking part in "normal" activities and I couldn't hold it in any longer! The dam broke loose!

Why is she able to do these things and Gavin probably never will be able to?!

I hate days like this! I hate when I let what life has given to me.....get to me! I hate when I feel sorry for myself! I hate when I look at the "bad" instead of the "good." But, every couple of months this is what happens. It all begins to be too much for me and I have to let it all out! Today is one of those days!

I am questioning so many things that have occurred in my life and I am focusing on all of the negative. I am wondering why I was given a child who had so much potential.....and then it was all taken away from him and I?! In my head I know that I am, and that I always have been, very blessed throughout my life.....but today, in my heart, I am hurting.

I am actually so happy to have been given a Down syndrome child! I even want another one! I feel that those born with DS have such a giving spirit and you can't help but feel loved by them and happy around them!

But, why did Gavin have to be born with such severe heart defects, spend so much time in the hospital, have so many surgeries, have to have a severe stroke, due to incompetence....which caused him to be legally blind and begin his ordeal with seizures....which causes him to be stuck at the age of an infant...for probably the rest of his life?! I don't want this life for him and I don't want it for me either!

I wish that Gavin could talk, walk, sit, eat, enjoy normal children's activities.....instead he can only lay there and he requires that every single one of his needs be met by someone else! It's not fair and today I am feeling it!

WHY???!!!

There is no one else on this earth that makes me as happy as Gavin does, but there is also no one else on this earth that can bring me to such saddness.....and today this stinks!

I hate that I am questioning God's plan for Gavin and my life, but occasionally I do and I hate days like this! I KNOW that God's plan is always better than my own and I know that tomorrow will be a better day, but today stinks and I had to get it out!

I wish that I knew what God's plan and reasoning is and was for Gavin and I.....but maybe I am blessed not to know the future for us?

I AM TRULY BLESSED.....I just can't see these blessings right now....my eyes are too clouded with tears.

I long for the day that I will be able to see my sweet boy walking and whole.....today this day cannot come soon enough for me!

Typing this out has helped bring some calm to me.....and the tears are subsiding. I will feel better soon, but today I'm feeling sad.

Gavin truly does make my life happier and better!



I'm just not feeling it today.


"Better to go to the house of mourning than to go to the house of feasting, for that is the end of all men; and the living will take it to heart. Sorrow is better than laughter, for a sad heart is made better. The heart of the wise is in the house of mourning, but the heart of fools is in the house of mirth." Ecclesiastes 7:2-4

Thursday, July 8, 2010

Gavin Loves Music!

Sometimes it's difficult to tell if Gavin enjoys something or not. He is usually in his own little world most of the time, but there are a few things that we know that he loves, and music is one of them! Gavin has a few favorite songs and when we begin to sing them to him, he usually starts to "sing" along with us!

Here are a couple of videos of Gavin enjoying some music provided by his big brothers. The videos don't show Gavin at his finest singing, but you can see that Gavin is enjoying himself and that he gets excited when he hears music. For some reason Gavin always seems to know when I am recording him and stops singing as loudly as he often does.....maybe he's just shy? :)

***Pause Music on right sidebar of this blog to hear videos***

Here is a video of Gavin "singing" with his brothers:

video

Gavin is unable to express himself in so many ways, but he is obviously moved by music, because he seems to "turn on" when he is sung too or when music is being played around him. As his Momma, who so desperately wants to see her son able to do SOMETHING.....ANYTHING, this makes me so very happy!

Here is another video from a few months ago. Jacob was "playing" the guitar for Gavin. Jacob's guitar playing ability is questionable, but Gavin sure seems to love it!

video


Have I mentioned how much Gavin brightens my days?! Well, he does! I am so blessed to have this special boy in my life!


"Make a joyful shout to the Lord, all you lands! Serve the Lord with gladness; come before His presence with singing." Psalm 100:1-2

Friday, July 2, 2010

Change..........Otherwise titled: The Longest Post on Record!

The month of June has flown by! I can't believe it's already July! Where did the month go? Summer is a third of the way over and we haven't even began to start it! I guess this is what happens.....time flies by, with lots going on and we forget to just be in the moment.

I do this blog for several reasons.

1) I like to "capture" our life, since it seems to fly by. I want to share what is going on in our life with family and friends, because since life continues to fly by and unfortunately I don't have the time or don't make the time to call them and chat about things, this is a great way to share our experiences with them.

2) I appreciate the support we receive from, and the support we can give to, other families walking a similiar road. We have "met" some wonderful people on this blessed road!

3) I want to give Gavin a voice and show others that even though he isn't capable of doing much....his just being here and alive actually brings us a WHOLE LOT!

Like I said, this month has flown by and I haven't been able to share or capture things that have been going on with the VW family. So, here I go!

Joel started a new job a few weeks ago. He had been at his previous job for 11 years and felt it was time to move on. We were really quite anxious about this change. I was worried because we have 4 children, one with special needs, and I do not work outside the home. So, insurance and a paycheck are a very important thing around here! And, Joel was nervous about trying something new.

I'm happy to say that so far, everything is going great! Joel is enjoying the change and the better hours and I can see that he appears happier. Plus, even though I'm not great with change, I am seeing that this change has been a great one! We are thanking God for this opportunity and hoping that all continues to go well.

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We had a very significant loss in our family last month as well. Joel's Grandpa passed away. He was 88 years old and quite the guy! Up until about 8 months ago, you never would have thought he was as old as he was! He was wrestling on the floor with our boys not too long ago and he used to drive them to school for me when Gavin was not doing very well a couple of years ago. He had so many great stories to share and he was a huge presence in our family! We miss him dearly! We miss his stories and we miss hearing him say to Gavin; "You're Grandpa's Boy!"

Here is a picture of Grandpa, Grandma and our boys:



We are very blessed to still have Grandma around though! She is quite the lady as well! Unfortunately, she is in the hospital right now and we are hoping she is able to get home soon again! We love you Grandma!!!

Here is a picture of her and the boys at Grandpa's funeral:



Here are a few more pictures from the funeral:



Here are most of the great-grandchildren singing "Jesus Loves Me" at the funeral:



Here are my handsome boys after the funeral:



And, here is Caleb being goofy with a rose from one of Grandpa's flower arrangements. Caleb is always good for a little humor!




Happy Gavin:



We sure will miss Grandpa!

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While I am so very thankful for the wonderful opportunity that Make-A-Wish is giving to Gavin and our family, I can't help but feel sad about it as well. Make-A-Wish is an organization that grants wishes to children who have a life threatening illness and who's life expectancy might not be too long. I know in my mind that Gavin might not live a long life, due to his heart defects, seizure disorder, lung disease and just the fact that those with Down syndrome have a shorter life expectancy.....but in my heart I can't accept this. Having a doctor fill out paperwork for Make-A-Wish, saying that Gavin qualifies for this organization is heartbreaking to this Momma! I am thankful for this opportunity, but not at the expense of maybe having to say goodbye to Gavin too soon!

While I am sad about this truth, deep down I know that all will work out just fine! Gavin shouldn't be here today! He was written off several times by doctors and has gone though many scares.....but he is here today! According to doctors, Gavin should have died at 3 months of age, 4 months of age, 5 months of age, 6 months of age and 7 months of age! HMMM.....he's still here! And, he is doing fantastically for Gavin! So, I'm going to try hard to dismiss these sad thoughts from my mind and trust that God knows more than doctors do and that He has the future already planned for Gavin and I. Only He knows the future and He will carry us through whatever the future holds!

As for making a wish....this is a difficult thing to decide! Gavin can't tell us what he would want. In fact, Gavin probably has all that he wants and needs! He is a happy boy, who loves to be held, talked to, sung to and played with.....his needs are met! But, I can think of a couple of things that might make him happy. He loves music, so a trip to Disney would be nice because there is a lot of music played there!

I was really hoping that we could have a 3 season porch added to our house, because Gavin doesn't tolerate heat like most of us can, plus he burns easily, etc......but he loves to be by his brothers and listening to them play and have fun outside....so this would have been great for him....but they do not do home renovations, so this wish is out.

Another thought that I had was an RV trip across America to visit some of our blogging buddies! I think that Gavin would love this and I know that I would too! So, who knows? Maybe we'll really get to meet some of you some day! :)

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FINALLY!

We went to the pulmonologist this week and Gavin and I might be seeing less of a "friend" of ours very soon!

This is his nebulizer machine:



This machine has been a "friend" of ours for so long! He and I, and sometimes Daddy, used to spend 3 times a day together with this machine. The last several months we have only had to spend 2 times a day together, but now......we only have to spend one time a day together! (As long as Gavin does well with this change!) This is great news! This means that Gavin's lungs are healing and that he is doing really well! YAY!

The crazy thing is, he and I have spent so much time doing nebs the last 3 years, that I don't know what to do with this extra time and I keep thinking that I have to do nebs with Gavin all day long! I'm not complaining though! This is one change that I will surely embrace!


"My son, fear the Lord and the king; do not associate with those given to change; for their calamity will rise suddenly, and who knows the ruin those two can bring?" Proverbs 24:21-22