Friday, May 29, 2009

Last Day.....

This is the last morning, for about 3 months, that I will:

Have to say:

"Hurry Up!, Take a bite!, Drink!, You are going to be late for school!, What are you doing?.....You are supposed to be getting dressed! Do you want to stay home from school? Brush your teeth! Quickly get your shoes on and head to the van!"

Have to hear:

"I can't find my folder., I forgot my lunch bag at school., I forgot that I had to do this homework., I can't find any socks that match., Where is my coat?, I can't find my shoes...I think that I left them outside by the trampoline."

It's also the last morning that I will see this for a while:

And, this: (Nolan and Caleb always wave goodbye to me when they get out of the van for school.)

And, it's the last time for a while that I will have to load Gavin up in the van with his PJ's on, just having had to wake him up to bring the boys to school.

I think that Gavin is happy about this!

I am so looking forward to this change! I'm looking forward to no homework and no studying! (Although I did buy the boys workbooks to work on this summer, to keep their brains from turning to mush! Jacob was not pleased about this, but Nolan and Caleb "Can't wait to get started on them!") I am looking forward to lazy days and playing outside with the boys, hearing all the commotion that goes on with them around! I'm looking forward to water gun fights and popsicle breaks! I'm looking forward to just spending more time with my boys!


I am SO NOT looking forward to hearing, "I'm bored., He pushed me!, I have nothing to do., He won't play with me!..........etc."

And, I'm not really looking forward to having these types of creatures brought to me all day long!

And, having to deal with crying because we have to let them go again! "But, he's my friend! Hopster wants to stay with me! I'll miss him! Why can't we keep him?!"

Yay! Summer vacation begins today! I am truly excited about this! But.....We'll see just how happy I am after a week of it! :)


"You have set all the borders of the earth; You have made summer and winter." Psalm 74:17

Wednesday, May 27, 2009

Planting Seeds

This past weekend Joel and the boys planted our garden. The boys enjoy planting the seeds and the plants. They also enjoy eating the produce that grows. But, they do not like weeding, watering or picking the garden! It's good for them though! I know that they will appreciate their efforts some day. Here they are planting the garden.

I can't wait to taste the fruits of their labor! (Well, minus the brussel sprouts anyway...Yuck! Joel loves them!) I only wish that Gavin would give food more of a try, but he still prefers and appreciates his tube feedings!

Here he is before I tried feeding him by mouth today:

Here he is during and after I fed him by mouth:

Here he is giving me quite the look of disgust!

He's tolerating it better than he used to. He used to cry and gag for several minutes after being given a bite. Now, he just gags a little, gives looks of how he feels about it, and complains for a short time. Maybe just maybe, there is hope that he will enjoy eating some day!

The Parable of the Sower Explained

"Now the parable is this: The seed is the word of God. Those by the wayside are the ones who hear; then the devil comes and takes away the word out of their hearts, lest they should believe and be saved. But the ones on the rock are those who, when they hear, receive the word with joy; and these have no root, who believe for a while and in time of temptation fall away. Now the ones that fell among thorns are those who, when they have heard, go out and are choked with cares, riches, and pleasures of life, and bring no fruit to maturity. But the ones that fell on the good ground are those who, having heard the word with a noble and good heart, keep it and bear fruit with patience." Luke 8:11-15

Monday, May 25, 2009

Remembering on Memorial Day

Today was a beautiful day outside! We spent a lot of time outside enjoying the weather and also remembering those that have passed on. Today is a day that we should remember the many who have given their time and lives so that we, as Americans, can live with freedom. Almost every year on this day, Joel takes the boys to the small town that he grew up in. They have a Memorial day service in the cemetery where Joel's Dad is buried. The weather was warm enough, so Gavin and I joined them this year.

The service is small, but powerful. It is an awesome way to stop and remember and thank those who have given so much for us. As one of the speakers said, "We should remember Memorial day in our hearts everyday." We have a lot to be thankful for! Here are some pictures of the service.

We also visited Joel's Dad's grave. The boys love to do this and to talk about "Grandpa Vander Wall." Jacob is the only one that got to know him, so he always shares what he remembers about him. We get a yearly picture of Joel and the boys at his site.

Next, we went to Joel's Grandma's grave site. And, just because our family of six always seems to encounter chaos and craziness when we all go out and about, of course there was adventure today! We drove to the spot that we remembered her to be at and then we spent close to an hour looking for her site. Joel just knew it was where we parked and I remembered it being near there too, but could we find it? No! So, we went to the cemetery office and sure enough, that's where it was supposed to be. They gave us a map and we went back to hunt it down. (Nolan and Caleb loved doing this!) After awhile it got to be frustruating. We figured that someone must have stolen her headstone. Finally we asked two grounds keepers to help us and they confirmed that this was where it should be, but none of us could find it! Joel and the guys started using shovels and a pitch fork to pound through the grass and finally one of them felt something hard. They started to dig and eight inches down they found her stone! Crazy huh?! They didn't know how this could have happened, but it did. It took a while, but it was worth it! We left feeling good that we were able to find it and the boys learned about perseverance!

Here is a picture of them digging the stone out:

Then we drove around, looked at flowers, went to the batting cages and finally home again. Gavin seemed to enjoy himself too, but I think that it wore him out!

Happy Memorial Day!!! Take time to remember those who gave you the gift of freedom!

"You therefore must endure hardship as a good soldier of Jesus Christ. No one engaged in warfare entangles himself with the affairs of this life, that he may please him who enlisted him as a soldier." 2 Timothy 2:3-4

Friday, May 22, 2009

Gavin's IEP

For those of you who do not know what an IEP is, it's an Individualized Education Program. Yearly, Gavin is assessed to see how far he has come in the last year and then we have a meeting with his physical therapist, a speech therapist, our city representative that is assigned to him, his teacher and a nurse. This meeting is usually dreaded for moms with children with special needs. It is kind of like conferences for our other children. We talk about how well he has done and then talk about goals that we have for him to set for the next year. We had this meeting on Wednesday. I didn't want to go, because it's a lot of paper work and also I get to hear and see just how far behind Gavin is.

I went into the meeting with little hope and actually came out with much hope! Like I've said before, we have been told not to expect much from Gavin. The stroke that he had affected his ENTIRE brain. Not all the cells were killed off, but every area of his brain was damaged. Some people have a stroke in one area of their brain and the rest of the brain can learn to do what the damaged area isn't able to do any longer. It takes time and relearning, but often times the person is able to progress with time. In Gavin's case, his WHOLE brain was damaged. This is why doctors are not hopeful that he will progress with healing and relearning of the brain. There is not a portion of Gavin's brain to take over for the part that was damaged, since it was ALL damaged.

Because of this fact, I have just accepted that this is the way Gavin is and that this is the way he will probably always be. It was difficult to accept, but I am a person that deals with reality and who does not hold out with false hope. It actually frustruates me when people say that "Gavin will get better, or Gavin will walk one day", etc. This is not likely, and I refuse to get my hopes up just to have them shot down again. I don't think of this as being pessimistic, just being real. These are the cards that Gavin has been dealt and we just need to play with what we have. (And, I happen to think that he is perfect just the way that he is!) Life may be more difficult with the way things are for Gavin and us, but life is a WHOLE LOT more full as well! He brings something to our life that no one else could. He is pure innocence and this is very liberating in this world that we live in.

Anyway, since I don't hold out for much, I was pleasantly surprised with the results of this meeting! At last years meeting, Gavin was determined to be at the 1-3 month level of a baby. I just rounded it up and considered him to be at about a 2 month old level. Keep in mind that he is over 2 1/2 years old. These were the results of this year's meeting: (Where they think that he is at developmentally now.)

Body Control and Movement: Birth - 7 months of age

Thinking, Learning and Playing: 4 months

Speech and Language: 3-6 months

Social and Emotional: 3-6 months

I was shocked to hear these results! I guess it pays to not have hope! I was pleasantly surprised instead of being heart broken! You may think that I'm crazy for being excited that my 2 1/2 year old is at an average of a 4 month old, but I'm happy! For a boy that was written off many times, he is doing great in my eyes! So, I will continue to work with Gavin, but I will still not get my hopes up for Gavin's future development. We'll see if I'm pleasantly surprised next year as well!

Great Job Buddy! Momma is SO proud!

I got to talk with Gavin's future teacher on Wednesday as well. She is TERRIFIC! I am still fearful of sending him to school on his own, but every time that I get to talk to her, my fears are lessened. She is SO excited to have him as her student and he responds really well with her. I know that I will still struggle with this decision, but I really believe that she and school will benefit him greatly! It's always harder on the mom than it is on the child anyway, right?! I'm still fearful of him catching illnesses, but she said that she discourages parents from sending their children when they are sick at all and she also wipes down the mats, toys, etc., twice a day with bleach water. So, he may even be safer in her environment than in my own!

So, hope is alive and well in mine and Gavin's world! The wonderful thing is, I know that it is always alive and well through God! This knowledge is what gets me through each and every day!

"And now, Lord, what do I wait for? My hope is in You." Psalm 39:7

Wednesday, May 20, 2009

Summer Wear!

It is finally warm enough to wear shorts around here and I am so happy about this! I bought Gavin this outfit a couple of months ago, even though he still wears the same size that he did last summer and can fit into all of last year's summer outfits. But, I couldn't help myself. I thought it was so cute! And, now I can dress him in it! I think that he looks adorable! What do you think?!

Today, Joel and I have been married for 14 years! It seems longer than that actually, but it doesn't seem possible either. We were just 23 years old when we got married and we have gone through a lot together and have grown up a lot together. It's easy to remember how long that we have been married. We just have to add a year to Jacob's age. I think that I would forget how long we've been married otherwise. Here's to 14 more and hopefully lots of grandchildren! :)

Gavin had his yearly IEP at school today. It actually turned out better than I had prepared myself for it to go! I'll explain more another day, because it's way too nice outside! Gavin and I are headed outside to watch the brothers play! Hope all of you are enjoying beautiful weather wherever you are! :)

"The day is Yours, the night also is Yours; You have prepared the light and the sun. You have set all the borders of the earth; You have made summer and winter." Psalm 74:16-17

Thursday, May 14, 2009

Gavin's Wheelchair

Gavin's wheelchair was delivered yesterday afternoon. The lady that helped us place the order also delivered it and spent time explaining to me how everything worked. Throughout most of her demonstration, all I could think was, "There is a wheelchair in my house and I'm not really listening because I don't plan on using this thing for a long time anyway." I don't know why I suddenly felt sick to my stomach and I don't know why I had such a reaction to it? I guess because there is such a stigma placed on those who need wheelchairs. I seriously sat there pretending to listen and trying to come up with good questions, but I had a very difficult time concentrating.

The wheelchair still sits in the same spot that she placed it in when she left and everytime that I look at it, I feel sad. I had planned on putting it in a room that we rarely use until we actually had to use it for Gavin, but I can't even do that. I don't want this chair in my house! I don't want Gavin to need this form of transportaion!

When he was measured for it many months ago, it didn't look so bad to me. It looked more like a stroller to me then. But, now that we have it here, it looks like a wheelchair. I think it's because it has more equipment on it for the support that Gavin needs. It definitely doesn't feel very comfortable, which I don't like. It needs some padding in it like his stroller has, that he uses now. Thankfully, he will fit in his stroller for a long time and I'll only need the wheelchair for school...if I have the courage to send him!

After I picked our other boys up from school, I asked them what they thought about it. Jacob and Caleb said, "Good." Nolan, our thinker, said, "Scary." I didn't really understand what he meant by this, so I asked him what he meant by it. He said, "You know, like when you are uncertain about something..." And, I thought to myself, "Exactly!" He picked the perfect word to describe the wheelchair!

Gavin's future is so uncertain for us. Will he ever sit up? Will he ever crawl? Will he need more surgery? Will he live for many years to come? There is so much uncertainty.....and this can be very scary! I suppose there is much uncertainty in all of our lives, but we don't focus on it because we take so much for granted. With Gavin, we take very little for granted. And, we don't have a lot of expectation, so it just seems more uncertain.

The fact is, there is NO uncertainty with God. He knows what each of our futures hold. Sometimes I forget this when I am caring for Gavin. There just seems to be so much responsibility and uncertainty. But really, we could all be just a step away from disaster or disability, if you think about it. There may actually be even MORE certainty with Gavin's life than I think that there is! I don't hold out for much hope with Gavin's future because we have been told not to hope for much. Yet, I hold so much hope for my other boys, when I have no idea what the future holds for them or any of us either! The only real certainty that I have is the certainty that I have in God. His promises to me will never be broken! I can count on Him! I may not be happy with my circumstances, but I know that there is great hope in my future! And, I know that there is great hope in Gavin's future as well! So, why do I make such a big deal over a wheelchair? I suppose it's because I am thinking too wordly most of the time.

I mean, Look at this face! Does he look worried about being in this wheelchair?! Could he care less about what others think of him?! He doesn't have a care in the world! This is how I hope to strive to feel, knowing that my needs will be taken care of by God, just as Gavin's needs are taken care of by his family and God!

On second thought he thinks, "Get me out of here! This chair isn't quite as good as I first thought that it was!"

Don't worry Gavin! Your Momma doesn't plan on using it much anyway!

"For You are my hope, O Lord God; You are my trust from my youth." Psalm 71:5

Tuesday, May 12, 2009

I need some advice and lots coming up!

I am wondering if anyone has any experience with Botox injections for their child? Gavin's neurologist is suggesting this for him. It supposedly helps with kiddos who have issues with high tone in their muscles.

Gavin is low tone in most of his upper body, which is partly to blame for his inability to have good head and neck control or to be able to sit up on his own. But, he has very high tone (stiffness) in his lower body, due to the stroke that he suffered. This also makes it hard to learn to sit up on his own because he is so stiff. The two in combination are not a good thing! You have to physically bend him at the waist to get him to sit on your lap and it takes a lot to bend his knees, as well, to change him. He always sits with his knees out straight and slides out of a sitting position constantly. It really tires you out to hold him for a long period of time because you have to keep him up in a sitting position with lots of effort. It's difficult to explain, but it would be wonderful if Botox could help with this!

I'm just wondering if this would help? I don't want to put him through the injections if they don't help much. And, are they even healthy to take? If any of you have any info on this, I would really appreciate your help!

Gavin has some other things coming up as well. I have to get his blood drawn to check his thyroid level. He takes daily Synthroid for hypothyroidism, but we are wondering if he is getting too much of the medication right now and this is attributing to his recent weight loss? I'm hoping it's an easy fix like this, because I hate seeing him so thin and not knowing what the problem is!

Gavin's wheelchair is finally coming in tomorrow! It has taken about 11 months to get it in! They call it a stroller and it pretty much looks like one too. It will be necessary to have if he goes to school next year and especially if he rides the bus, because it is transit ready for safety. Don't even talk to me about school and bus riding though! These two topics scare me to death! I am so torn on what to do with him next year! I know that school would be good for him, because he would get so much more therapy from teachers who know what to do for little ones like Gavin, but the thought of sending him away from me when he can't talk or do anything on his own really worries me! Plus, there is the higher risk of him getting sick factor to think about! And riding a bus on his own?! This worries me even more! The problem with driving him to shool myself is that the times are the same times that I will have to drop off or pick up our other boys from school. Anyway, I have time to think about all of this, but I don't want to!

Gavin's P.T. has also helped us in getting some other new equipment ordered for him. It will probably take forever, like the wheelchair, but we are looking forward to getting it. Hopefully they will help to further the progress that Gavin has made over the last couple of months.

We ordered a new chair for him. It's called a Tiger chair. It can raise up to table level or go down to floor level. This will be great for use at the kitchen table and for playtime! Hopefully he likes it better than this chair that we tried him in at his school!

We also ordered a stander for him. He needs this to help build bone strength, since he obviously doesn't use his muscles or bones like an average child of his age. He is also being fitted for AFO's to wear while in the stander. They are like braces to help keep his feet and heals in their right position. The stander that we ordered is different than this one and hopefully he likes it better than he did the one we tried him in at school!

I'd much rather see Gavin happy like this!

So, there are lots of exciting and scary stuff coming up for Gavin! I'm praying that it all works out and benefits him in a positive way! He has really made some exciting advances in the last few months and I can't wait to see what the future holds for him and us!

"For I know the thoughts that I think toward you, says the Lord, thoughts of peace, not of evil, to give you a future and a hope." Jeremiah 29:11

Sunday, May 10, 2009

Happy Mother's Day!!!

A fairytale Mother's Day:

Breakfast in bed., Children who get along all day long., A clean house., Everyone is healthy and happy., Lots of "Thanks Mom for all you do!"

My reality of a Mother's Day:

Awoke to Gavin crying, who had a HUGE dirty diaper explosion and needed serious cleaning up., No time for breakfast before church., The boys were arguing and acting goofy most of the day, as usual., Our bathroom sink was leaking and water was filling the cabinet below it., Gavin is getting sick and there were several injuries to our other boys as well!

And, You know what? I wouldn't know what to do with myself if it had gone any other way! :) Plus, I really wouldn't want it any other way! This is my life and I wouldn't change the 'job' that I have for ANY OTHER!


Happy Mother's Day to all you wonderful Mommas out there!!! I hope that you enjoyed your day!!

"For You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well." Psalm 139:13-14

Friday, May 8, 2009

Forever a Baby

I absolutely ADORE babies!!! I always have. I don't think that there is anything else on this earth that makes me more happy than a baby! My most favorite stage of a baby's life would probably be at 6 months of age. They are usually able to sit up at this age, yet unable to crawl and get away. They are so interactive and cute at this age! Plus, they can't talk back to you yet, but they are usually saying 'ma ma' and 'da da.' I have said many times; "How perfect it would be if they could just stay this way forever." Well, now I'm second thinking those remarks!

I kind of got what I wanted. Gavin will most likely stay a 'baby' forever, thanks to the stroke that he had. Depending on how long God plans on keeping him here on this earth, (with his lung and heart issues, his life expectancy is much shorter than our own), his life will be spent living mostly babylike. He is at about a 2 month level now. I pray that he can get to at least a 6 month level, because that is my favorite age :), plus then he could at least sit up on his own. Only God knows how far Gavin will advance.

There are many positives to having him stay a 'baby' forever. He will always like to cuddle with me! He won't talk back to me! I can always dress him however I want! He'll always live with me, at least until I can no longer care for him, ETC...

BUT...lately I've been thinking about the many negatives as well. Such as the following: He WILL grow and get bigger. This will make for a very heavy 'baby'! He can't tell me what he needs or feels. (This one especially bothers me!) So often I think to myself, "Is he hungry? Is he cold? Is he hot? Does he hurt? Is he bored? Is he enjoying this? How would I know if something bad happened to him when I wasn't around? Does he want something? Does he have an itch? Is he comfortable?.....and the list goes on! I am constantly thinking of his needs. I want him to be happy and comfortable, but since he can't tell me if he is, I need to make sure that he is feeling as good as he possibly can be.

I love Gavin just the way that he is! But, I sure hope that he is loving life the way that it is for him. He's my 'baby' and he will always be my 'baby'!

And, just because I am CRAZY and I LOVE baby bottoms, I had to take a picture of Gavin's! Don't worry it's covered! Check out this Levi's covered bum! I'm in love!

"Therefore do not worry about tomorrow, for tomorrow will worry about it's own things. Sufficient for the day is it's own trouble." Matthew 6:34

Wednesday, May 6, 2009

Bring on the Calories!

Since Gavin has lost 3 pounds in the last month and a half, his nutritionist has formulated a new plan for feeding him. It doesn't make sense why he has lost so much weight, but she is hoping that he just needs more calories. Gavin has stayed at the same weight (within half of a pound) for about a year and a half. Since he had been too heavy at one point (2 years ago), this hasn't worried them. But, now that he is losing weight, it is worrisome. It's not like he expends a lot of the calories that he gets. He pretty much lays around, although he is more wiggly than he used to be and he rolls over to his tummy continuously throughout the day. (He still can't figure out how to roll from his tummy to his back though.) So, why he is losing weight is a mystery???

We have been instructed to increase his calorie intake by 11 percent. Why 11%, I don't know? I thought it was kind of funny actually. Why not 10% or 15%? I have found that doctors and nutritionists are very exact and precise with special kiddos like Gavin! For some reason I find this to be funny. I guess because I'm not a person that reads the directions. I just add a little bit of this and try to figure it out on my own. Having Gavin has made me become very exact in many ways. Maybe this is a good thing, but I don't like it.

Gavin is still getting the same amount of fluid that he was getting, but he is getting more of the food part of his intake and less of the water part. He struggles with getting too much fluid into his stomach and has gagging issues, so increased volume wasn't possible. Since he receives all of his food/water through his G-tube, it works out that he is still getting the same amount of liquid each day. It's just in a different form.

Am I boring you? This is what I mean by having to be more exact, since Gavin has come along. Some of you probably understand and are interested, the rest of you are probably yawning. :)

Anyway, hopefully this works for Gavin. He doesn't look skinny, especially in pictures, but that is because his face looks full and he is short for his age. (Most people with Down syndrome are on the shorter side.) If you saw him in his birthday suit, you would see just how skinny he is! His tummy has NO extra fat. You can see and feel his ribs. And, his legs are SKINNY! So, Bring on those calories! I wish that I had this problem!!!

"Then the King will say to those on His right hand, 'Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in.'" Matthew 25:34-35

Monday, May 4, 2009

How You Know That Summer is Surely Coming:

There are several refreshing signs that let you know that Summer is on it's way here in Michigan. Winter seems to last forever here and some days it seems like warm weather will never come again! This weekend showed signs that we are confident that warm weather is definitely on it's way!

Joel tilled the garden and helped the boys put up the trampoline again. The trampoline is a favorite pastime of theirs and it means that I will be told, "I'm bored.", a whole lot less!

Caleb has started bringing me flowers that he has picked. He loves doing this and I love getting them!

Like I said in my last post, sports take over our lives.

And, Gavin can wear his baseball hat, instead of a winter one, when we are outside!

AHH.....Summer is finally on it's way! :)

"To everything there is a season, A time for every purpose under heaven." Ecclesiastes 3:1