Friday, June 27, 2008

On the mend.....

Gavin Helping Daddy Recover

Joel's surgery was yesterday. Everything went well. The surgeon said that the tendon tissue was in great shape, better than normal, so it should heal nicely. Healing will take quite some time. The recovery time is longer than we were originally told. He will not be able to put any weight on his foot for 6 weeks and then he will wear a walking cast for up to 3 months! He was also told that he shouldn't drive, since it's his right foot! This will probably be our biggest inconvenience! Joel says after the first week or two, he plans on learning to drive with his left foot. We'll see about this... He plans on going back to work on Monday. This seems early to me, but he's confident that he can do it. I got him a kneeling walker, so he'll be able to kneel his bad leg on it and scoot around. So, maybe it will work. But, it's not like he can sit around with his leg elevated with the type of job he has! I know he'll be happier working though, since he hates to sit around doing nothing. He's stubborn, so I know he'll find a way to make it work.

He's handling the situation quite well so far. He's in good spirits and staying positive. He's depressed that he can't play any sports for quite awhile, but otherwise doing well. He isn't in much pain and we are thankful for this! We are also thankful that the surgery is done and that it went well, and that his injury wasn't something worse! So, we are trying to stay positive. I think I'm having a more difficult time with this, than he is. I was SO looking forward to a summer of fun! Last year's summer was not fun for our family. Gavin was in and out of the hospital during that time. He was medically fragile and we stayed home most of the time. When we did do something, we usually weren't all together because either Joel or I would stay home with him. So, this year we were going to make up for last year by having more fun together. I guess we'll have to be creative! Anyway, I'm depressed about this.

We want to thank those of you who called and offered to help us out with the boys or meals. Sorry we haven't gotten back to you. We've been a little busy, but we are doing fine so far. We'll let you know, but we think we've got it covered for now. We do appreciate your support! Just keep praying for our sanity and that Joel heals quickly!

"Therefore strengthen the hands which hang down, and the feeble knees, and make straight paths for your feet, so that what is lame may not be dislocated, but rather be healed." Hebrews 12:12-13

Wednesday, June 25, 2008

Down and Out!

Our family is need of prayers again! Joel and I were playing volleyball lastnight and he ruptured his Achilles tendon. He is supposed to have surgery Thursday to repair it. It should be an easy repair since the tendon is still connected to the bone, but it will still be a 4-6 week recovery time.
Please pray that the surgery goes well. Please pray that the recovery is fast and easy. Please pray that our family handles this added stress well. Please pray that Joel does not go out of his mind! (He is NOT one to sit around and take it easy at all!) Please pray that Joel will be able to get back to work very soon! Just pray! THANK YOU!
Just last week I was worrying about, what would happen if something were to happen to me? Last night as we were driving to urgent care, I said, "I'm just glad this happened to you and not me!" Aren't I such a supportive wife?! :) But, seriously, I really don't know what would happen if I weren't able to care for Gavin. So, although this will be tough on our family, especially Joel, I am thankful that it wasn't me and I'm thankful that it wasn't something worse!
Now, to find something for Joel to do...?.....?...before he rips that splint off and starts gardening or something! I think I'll have my hands full trying to keep this one down! Let me know if you have any ideas!
"Now no chastening seems to be joyful for the present, but painful; nevertheless, afterward it yields the peaceable fruit of righteousness to those who have been trained by it." Hebrews 12:11

Tuesday, June 24, 2008

"Yay God!" --- (quote by Jacob, age 3)

He has made everything beautiful in its time. Also He put eternity in their hearts, except that no one can find out the work that God does from beginning to end." Ecclesiastes 3:11

Thursday, June 19, 2008

The answers are all there!

I let my mind go wandering again! I don't know if it has to do with the fact that it is WAY too quiet here, since it has only been Gavin and I home alone, (the other boys are with grandma today) or if I have been suppressing worries that just needed to get out. Either way, I found myself in a mess. I've been thinking about how much I miss feeding Gavin by mouth., I've been thinking about how he was before the stroke., I've been thinking about not being able to just get up and go to the grocery store easily, since I still haven't figured out a way to take Gavin alone. (He can't sit up, so the grocery cart is out of the question and the stroller won't hold enough groceries. I've been given the suggestion of pushing the stroller with one hand and pulling the cart with my other hand by a wonder woman, but that just isn't safe for fellow shoppers! You should see how well I drive just the cart alone!), I've been thinking about how crazy it is that I long for a quiet day alone, but when I get the chance I'm miserable without all the craziness!, I've been thinking about the very extreme possibility that Gavin may never sit up or develop any further., I've been thinking about long term plans for him. (Who will take care of him if something happens to me? Joel doesn't even know a whole lot about what Gavin's meds, doctors or schedule.), I've been thinking about how all of this may be affecting our other boys. (although, they really seem to take it all in stride and appear happy to have Gavin as a brother.), I've been thinking about how ridiculous it seems when others complain to me about their small 'problems'. (although I totally get how those 'problems' seem enormous when you haven't been faced with something more heart breaking and worrysome.), I've been thinking about how my worries don't compare to a whole lot of other people's!, I've been thinking about how different our life would be right now if mistakes weren't made and Gavin hadn't had a stroke., I've been thinking about how there really isn't a support group or book that I can totally relate to...........O.K., I think you get the picture!

Anyway, like I said I'm a mess! I haven't answered the phone today, because I just don't feel like talking to anyone. I haven't done hardly any of the household chores that I planned on doing. All I've done is think about these things and hold & love on the Vinster. (This was the fun part!) Finally I snapped out of it and looked at my bible. I thought to myself, "Hello! The answers are all right there!" I don't know why I let myself dive into despair so deeply, when I could just find the comfort and resolutions right there before me! I guess we all have to feel like we are sinking sometimes before we look for a life raft! I'm thankful for mine, but I just have to remember to rely on it at all times! So, finally, I opened my bible up to the concordance and looked up the words suffering and afraid. I was led to several scriptures which got me 'floating' again and breathing some fresh air! I may not have been told exactly, "Alicia, don't worry about who will care for Gavin if something should happen to you. I have ordained for _____ to take care of him." But, I was told, "Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms."(James 5:13) and "Draw near to God and He will draw near to you."(James 4:8) and I was also reminded of Psalm 23.

God has it all figured out FOR me! I have nothing to fear! He has gotten me through more that I thought I could endure and He will continue to do so! I am so thankful for this knowledge! Now.....time for some chores! :(

"Whenever I am afraid, I will trust in You." Psalm 56:3

Monday, June 16, 2008

Stand up for what you believe in!

I read something today and I felt that I had to share it with others. Last week I was told something about Barack Obama that really disturbed me. I couldn't believe that it could possibly be true, so today I googled to find out for myself. I'm sad to say that what I was told was true. I usually keep my mouth shut when it comes to politics, for the most part, because it seems to get me into trouble. Don't get me wrong, I am definately passionate about what I believe in! I always base my decisions on the word of God, so this makes the decision process quite easy! But, with what I read today, I feel obligated to step out of my 'comfort zone' and tell you what I learned.

There is something called the Born Alive Infant Protection Act, that thankfully is in affect today. It's an Act that provides protection for babies that survive a late term abortion. This act was shot down for several years by Obama when he was senator of Illinois. He was the ONLY senator to vote against this act. What this act does is make it possible for babies who are aborted late term, that are born alive, to be held and cared for until they die. Obama would not vote for this humane act to be allowed! He felt the baby should be left to die alone. The following is something I copied and pasted to explain a little of what he would not support:


The term “born alive,” with respect to a member of the species homo sapiens, means the complete expulsion or extraction from its mother of that member, at any stage of development, who after such expulsion or extraction breathes or has a beating heart, pulsation of the umbilical cord, or definite movement of voluntary muscles, regardless of whether the umbilical cord has been cut, and regardless of whether the expulsion or extraction occurs as a result of natural or induced labor, cesarean section, or induced abortion.

I first encountered Barack Obama on March 27, 2001, when I testified before the Illinois Senate Judiciary Committee, of which he was a member. My testimony included my description of holding a premature aborted baby until he died:

One night, a nursing co-worker was taking an aborted Down syndrome baby who was born alive to our Soiled Utility Room because his parents did not want to hold him, and she did not have time to hold him. I could not bear the thought of this suffering child dying alone in a Soiled Utility Room, so I cradled and rocked him for the 45 minutes that he lived. He was 21 to 22 weeks old, weighed about ½ pound, and was about 10 inches long. He was too weak to move very much, expending any energy he had trying to breathe. Toward the end, he was so quiet that I couldn’t tell if he was still alive unless I held him up to the light to see if his heart was still beating through his chest wall. After he was pronounced dead, we folded his little arms across his chest, wrapped him in a tiny shroud, and carried him to the hospital morgue where all of our dead patients are taken.

“What we are doing here is to create one more burden on women, and I can’t support that,” Obama concluded, and voted “no” in committee again. The bill went again to the Senate floor, where Obama was the sole speaker against it, claiming that it would impose a “burden” on physicians. Obama had actually, in April 2002, apparently cast a vote that would continue to allow live birth abortions in the state of Illinois. "We are talking about a situation in which, in the course of an abortion procedure, a child has been born alive — is out of the womb, breathing and living on its own — and he cast a vote against the idea that we should not stand by and let that child die!"


It makes me almost physically sick to hear that someone could be so cold-hearted to allow this to occur! How could someone just let a baby die alone in a room, suffering, by themselves? I've always struggled hearing such things, but even more since having Gavin. There are so many selfish people in this world who would look at Gavin and others like him, and think more about themselves than one who doesn't appear to be 'viable' with this world. There are so many things wrong with Gavin's health, but does this make him less of a person or make him not deserving of love and care?! Life is not all about us. Our family's life may have been changed considerably since having Gavin here with us. We may not be able to just get up and go to do things that we want to do. We may have a little more responsibility than we bargained for. We may not have a 'bright future' ahead of us, on this earth, concerning Gavin's abilities. But, IT'S NOT ALL ABOUT US!!! All of us really need to stop being so selfish and consider those less fortunate than ourselves!

Today Gavin went to the eye doctor. She said that his eyes actually looked better this time, than the last. This is good news, but as she was finished, she asked if I had any questions. I asked what was considered legally blind. She told me that Gavin was considered legally blind! I had no idea! (I want to clarify that Gavin can see, since he tracks objects, but not very well.) She had never shared this info with me and would not have, if I hadn't asked this question. It makes me wonder if it's because she thinks that his life isn't 'worth' anything anyway, so why even do anything about it?! We are faced with this kind of thing all the time. Gavin is looked at as being 'not worth it' when compared to the "average child his age." We have been told this! We have also been told by a lawyer that a jury would not vote for any compensation for Gavin, since his life is somewhat 'worthless' anyway! I want to know WHO gets to decide this anyway?! Yes, Gavin won't be able to do what the 'average' person is able to do, but he is still a person! He still feels love and shows love! In fact, if you ask me (and I know that I'm biased), I'd say that Gavin and others like him may have MORE to offer others than the "average" person! I say this because I've learned more, felt more, gave more of myself and have been blessed by more since he's been around! Thank you Lord for Gavin and those like him! Lord, may you help others to see their importance like I've had the opportunity to see so brightly!

I was feeling quite sad about the diagnosis that was given to Gavin today. I don't really know why I was so sad, since he could see the same amount when we left the office as when we arrived there. I guess it was just hearing those words out loud. Anyway, while I was looking for a verse to end this post with, I was led to a verse in the bible that gave me so much hope and happiness! God ALWAYS gives us what we stand in need of! For this I am very thankful!

"For we walk by faith, not by sight." 2 Corinthians 5:7

Friday, June 13, 2008

"Songs for Jesus"

This week our church had Vacation Bible School. Yesterday, VBS ended with a program and singing by the children. I was so impressed with the program and went away feeling very uplifted! I really don't think that there is a lovelier sound than that of children singing songs to our Lord! I sat there feeling a little emotional while hearing the large group of children singing with all their hearts about God's word and creation. Caleb was so cute and sang with all his might! I just had to share a couple of the pictures!
Thank You Lord for children! Thank You for showing us faith through a child's eyes! And Thank You for the freedoms our country has that we can worship and sing of your wonderful truths!
Last night, after hearing the uplifting songs of the children, I remembered something Jacob would say to us when he was little. He loved to listen to his bible song tapes.....A LOT! Joel and I would become weary of hearing them over and over again. One day we refused to put one of his tapes in while traveling in the car. This was his response and argument for us: "But, MY songs are for Jesus!" Joel and I just looked at each other, laughed and put the tape on...AGAIN! There was no argument for his response, he won once again! :) I say once again, because Jacob always had a way of coming up with reasons why we should or shouldn't do something. And, let me tell you, they were usually quite good! Like for instance, at the age of 4 he was not obeying me and I said that I was going to have to punish him if he didn't obey. His response? "You don't have to punish me mom! Remember...those bad guys put Jesus on the cross and He took the punishment for me." What could I say to that one?! I tried not to laugh and told him that he was right, but that we still deserved punishment for our bad behavior. Children have such an innocent way of teaching us such important lessons! Just today I muttered, "Children!" because they were goofing off and being obnoxious. Jacob said to me: "You are just lucky to have us Mom!" Yep! He was right again! I am very blessed indeed!
"Assuredly, I say to you, unless you are converted and become as little children, you will by no means enter the kingdom of heaven." Matthew 18:3

Monday, June 9, 2008

A Day In the Life of Gavin (Part II)

Giving a little smile!, Wearing brother's coon hat!, Looking sleepy and cute!

Taking a rest!

In the last post I forgot to update everyone on Gavin's feeding routine. Of all the things I'm asked about Gavin, this is probably the one that tops the list. So, here you go.....Gavin is still only being fed through his G-tube. This is the tube that was surgically placed directly into his stomach. He is fed Pediasure. He is still unable to have liquids since they are too thin and end up going into his lungs. He is allowed pureed foods, but has a very hard time with them! The feeding tube has been such a blessing! It allows Gavin to not have a tube up his nose or down his mouth and it makes for giving his many medications very easy. He doesn't have to taste them and they go down a whole lot easier this way! And, obviously, the tube also gives him the nutrition he needs to survive! I struggle a lot with not being able to feed him by mouth, especially not being able to give him a bottle. He was able to have a bottle early on in life, but we found out that he was aspirating the liquids into his lungs. This probably attributed to the severe case of pneumonia that he had. When he did drink from a bottle, he did not have a very strong suck, but he really enjoyed it. After having a ventilator tube down his throat for months, he did not want ANYTHING in his mouth! This is why he struggles so much with eating any foods by mouth. Add that to having had a stroke and feeding by mouth is just NOT an fun thing for Gavin! Poor little guy! It's something that I struggle with daily. I wish he would want to eat by mouth, but I understand why he wouldn't want to. I know that I need to keep working on this with him, but I hate to watch him suffer so much when I try to. He gets so upset! He gags and sputters so much, that I usually just give up. So, who knows if he EVER will tolerate this? It's something I pray about.

Gavin is hooked up to a feeding pump for about 16 hours each day. We have it running all night long, at 1 1/2 ounces per hour. During the day and evening hours we disconnect the pump in 2-3 hour increments, totaling 8 hours, that he is off the pump each day. In some ways this makes life difficult, but in other ways it makes it easier. It's more difficult, because it's hard to carry Gavin around along with his pump. For one, he's an arm load already! And two, there is a risk of pulling out his tube if we trip on it or something. It's easier, because we just have to fill the bag up with Pediasure and the pump does the rest for us! Although, I'd trade the easy part any day, if that meant Gavin could or would eat by mouth! I'm holding out, hoping this will change some day.

Another thing that I'm asked a lot is whether Gavin is crawling yet. The answer is No, not even close! He doesn't even roll over! This may be our answer forever, due to the stroke he had, but I'm holding out hope for this one day as well. That's all we have with Gavin.....Hope. We would drive ourselves nuts if we worried all the time or if we thought we could change any of this ourselves. We are not in control! Because we aren't the ones in control, we are able to have Hope!

Gavin is FINALLY getting some teeth! We were beginning to wonder if he had any in that mouth of his. His P.T. told me that children with Down syndrome usually get them later, plus he doesn't chew on anything, so they haven't had any help breaking through the gums. But, they are definately in there and making their way through.

Now you know what Gavin's day consists of. He is very dependent on us. He would not be alive today had he not had so many surgeries. He would not be alive today if he did not have a feeding tube. He would not be able to do much of anything if he didn't have us around to care for him. He depends on others for everything! This is sad, but true. Gavin's dependency on others is obvious. There is no doubt that he would not be here today without depending on someone else! But, as I was so fortunately reminded by Joel's Aunt; Aren't we all very dependent on Someone?! We ALL are dependent, we just don't see it as clearly as we do with Gavin and others like him. We ALL stand in need of God's help. We may think we are doing a pretty good job in our life on our own, but we must all remember WHO gave us this life! We are mere humans, capable of nothing without God's power and grace! Some days I think to myself, "Gavin's got it made!" He may be dependent on someone for everything, but at least he's not thinking that he can control his world. May we all remember that we, too, are dependent on Someone for everything and that we should trust THAT Someone with our everything!!! Thank you Lord for this knowledge and the Hope that comes from having it! AMEN!

"Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths." Proverbs 3:5

Friday, June 6, 2008

A Day In The Life Of Gavin (Part I)

Playing with my toys, Doing Physical Therapy, Snuggle time with Mom

Practicing head lifts, Playing with Big Brother Jake, Hangin' with Dad and Brothers

People have been asking me how Gavin is doing and progressing, so I thought that I would give a thorough update on a day in the life of Gavin.

Gavin has been making little strides developmentally, but he's still at around the 2 month level of a baby. Obviously, this is way behind considering he's 20 months old. This is hard for us, but when we consider how much he's been through and having had a severe stroke, we are pleased that he is able to do anything at all! He has been giving us more smiles, which is SO great to see! They are usually just little shy smiles, but the cutest I've ever seen! He has been more alert and trying to relate with us a little more. He's been vocalizing with us a lot, mostly just cooing sounds, but when he cries he sounds like he is saying "Maa...Maa..." He knows who to call! :) He is attempting to sit up a little and is gaining slight head control. We work on this a lot! That's about it developmentally.

As for his heart, he still has a significant leak in his Mitral valve, but his body is tolerating it well. This is such a blessing! A year ago, they thought that they would have to replace his valve soon, which would not have been a good thing at such a young age, so we are very happy that his heart is holding out for now. He is only going to see the cardiologist every 6 months now, so they must be confident that he is doing well cardiac wise! Either that, or they got tired of seeing us so often?! :)

Neurologically, he is obviously not where he should be, due to the stroke, but he is doing better. We had a visit this week to his neurologist's office and they asked if I wanted to know the results of his last EEG. I said, "Of course, although, I know it's probably not normal." Guess what I was told?! It's essentially NORMAL! He showed NO signs of spikes on the EEG, which means that there is NO seizure activity going on! YAY!!! There were some slower brain waves indicated, but they attributed this to the Phenobarb medicine that he was still on at the time. So, this was great news to hear! They want to start weaning him from another seizure med that he is on and hopefully this will go well. If he does well and does not begin having seizures again he will be on only 1 seizure med, compared to 3! They were a little concerned with his weight. He has not gained any weight in months and has actually lost a little. So, for that reason and others, they are refering him to a doctor that specializes in special needs children. I am VERY relieved about this! This doctor will be able to know what his needs are better and will be able to help me work with his other doctors more efficiently. Up until now, I've had to make sure that they are all working well together and that they are doing everything that they should be. This has not been easy with all the doctors that Gavin has, plus I don't know everything, so I'm sure things are being missed. I think this will be very helpful!

As for medications that Gavin is on.....He is only on 7 at this time. Sounds like a lot, but he had been on around 12+, so things are getting a little easier in this department. I only need to make up 10 syringes each day now. This does not include the breathing treatment medications he gets 3 times per day via the nebulizer. The pulmonologist has not decreased these. He said as long as Gavin is staying healthy and out of the hospital, we shouldn't "mess with a good thing." I totally agree!

Gavin continues to get physical therapy 1 time a week, although less frequently during the summer months. But, Joel and I work with him too. Sometimes I wonder if it does any good, but we keep at it, hoping for some progress.

So, now you know how Gavin is doing. I know it's hard for people to really know, since we haven't brought him out much. Life is definately getting easier, but we have a long way to go. Please continue to pray that Gavin will make significant progress in the years to come and that we continue to be at peace with whatever God has planned for him and us. We feel very blessed to have Gavin in our lives and know that God has a great purpose in whatever the future holds.

"Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ." Romans 5:1

Monday, June 2, 2008

Live like you were dying

I just posted a short time ago and, ironically, chose the song: "Live like you were dying" as the song to play on the blog for the day. After posting I went to a site that I've been following about a precious little baby named Jacob. ( When I arrived there, after not visiting his site for a couple of days, I found out that he had passed away Saturday evening. My heart aches for his wonderful family! Please be in prayer for them, as they must be suffering so! I know that they will get through this. I know this because they have such a huge faith in God! But, please keep them in your thoughts and prayers!

Little Jacob's life has surely touched so many and I know that God had a great purpose in him! Jacob's family often signed off on their posts by saying that we should "go hug someone you love tightly today" or to do something kind for someone else. They were living a full life with Jacob, knowing that his life on earth was going to be short. His family took such great care of him and saw what a blessing his life was! So, in memory of this sweet, miraculous boy, I want to remind all of you to "live like you or someone you love were dying" today and every day! Live!! And, more importantly, Live for the Lord!!!

"Do not fear any of those things which you are about to suffer. Indeed, the devil is about to throw some of you into prison, that you may be tested, and you will have tribulation ten days. Be faithful until death, and I will give you the crown of life." Revelation 2:10

"This is My commandment, that you love one another as I have loved you." John 15:12

School's Out!

Friday was the boy's last day of school for the summer. Jacob is thrilled! Nolan and Caleb are sad. Gavin seems happy to have all of his brothers around. I'm not sure how I feel about it.....

Friday afternoon time table of events:

12:00 Pick them up from school
12:30 Ate a LOUD lunch together
1:00 Sent them out to play
1:30 Was asked, "Can we come back in now?"
1:30-3:30 Heard several arguments, "Uh Huh!", "Uh Uh!"
3:30 Was told, "Mom, I'm bored."
4:00 Had to break up a wrestling match(with crying and injuries)between Caleb and neighbor

Summer vacation is here! And.....I'm looking forward to (almost) every moment of it with all of my boys! Remind me I said this later! :)

"But Jesus said, "Let the little children come to Me, and do not forbid them; for of such is the kingdom of heaven." Matthew 19:14