Gavin is doing well today. They were hoping to get the ventilator off today, but they feel that there is a little swelling in his throat and want to give him a steroid to decrease the swelling for 24 hours before removing the tube. Patience!!! They want to give him the best opportunity to get off and stay off the vent. So, I understand their reasoning.

My sister is working on a new site (note: the site she was working on is THIS site you are reading...all entries you see here were originally on a different site) for me to update you on. THANKYOU AMY!!! I received an e-mail about some of the things that I've posted. I guess it was from CarePages. They erased some things that I had updated you on, saying that they were negative comments. They are now monitoring our site and will shut it down if anything else negative is put on it. Of course it's been negative! Look at all that Gavin's been going through! So anyway, thanks to Amy, we will soon be updating you from a different site, where I can tell you all that I feel is necessary.

Please pray that Gavin continues to make progress and can come off the vent real soon. Pray that his brain function is normal too! Thankyou!

I'm going to leave you with something that I read in my devotional. Nolan's class is also learning about this! I guess I was meant to hear this! Anyway, it has definately given me comfort, so I'm going to share it with you. It's from James, Chapter 1. It talks about suffering from trials and learning patience from them. It also talks about being full of joy because the trials will bring good. We are to pray and "ask God in faith, with no doubting" during these times. I learned from this, because I pray all the time, but when thinking about it, I have found that I am probably doubting God's ability to change things at the same time! I think it's because we've seen so much continue to happen with Gavin, but I have to remember all the good that has come out of this too! Plus, who am I to doubt what God has the ability to do??!! So, from now on I plan on praying with true faith and no doubting. I know that I will need to depend on God for this ability and ask for this in my many prayers as well.

Have a great day!

Love, Alicia

Gavin is doing quite well today. They are hoping to extubate him tomorrow. They have gotten rid of a few meds, I.V. lines and machines. We are very happy about this! Pray that he continues to improve and can get off the vent tomorrow! Hopefully with less interference they will be able to do another EEG and get an accurate reading. Pray that is shows normal brain activity!

Hope you were able to enjoy the beautiful weather we're having! My mom stayed with Gavin for quite awhile yesterday, so I'm thankful that we were able to enjoy some time outside! Thanks mom!!!

Thanks for your continued support and prayers!

Love, Alicia

Gavin is doing better in some ways and staying the same in other areas. He is still on the vent and will be for a few more days at least. He is a lot more sedated with the anti-seizure medicine, so they want to make sure he's up for the task of breathing on his own before they take him off it. He hasn't had anymore seizures thankfully.

I've been home with Nolan today. He's feeling sick again. I've talked with the nurses a couple of times and the doctor once, so I'm being kept up to speed mostly. Plus, my mom spent some time with him today. She's fillng in making sure they take good care of him! :)

The plan for the weekend is to just let him rest and to let him tell them what he needs. Hopefully he won't give us anymore surprises and the doctors any more puzzles to figure out! I have a feeling that he lays there chuckling knowing all the commotion he causes! Of course, he hasn't caused all the problems. But, he sure does demand attention!

Hope you have a great weekend! It sounds like it's going to be gorgeous around here!

Love, Alicia

Today my anger is fading. I'm glad about this. Yesterday I felt so uneasy all day with all that anger brewing in me! Today brings a feeling of defeat. I just feel depressed and anxious. There are so many uncertainties with Gavin's future. As if there weren't enough to begin with! Now we are uncertain about his brain function due to the seizures that he continues to have. They feel his brain is "irritable" due to the fevers, DEHYDRATION! and infection. The EEG showed low brain waves, which is not good, but they aren't sure if the results were skewed due to many factors. Those factors being: A lot of sedation from the anti-seizure medicine, being on the vent, having a pacemaker and a lot of electrical activity in the room with all the machines he is needing. So, add possible brain damage to all his other issues! I'm just ready to go to sleep for a week and to wake up finding this all to be a bad dream! It's hard to have hope when there are so many uncertainties! I'm still grasping for it though! I know that anything is possible with God and that miracles are still possible. Knowing this and having all the support we have from so many are the only things keeping us going. Which is A LOT! I just have to keep reminding myself this!

Please continue to pray for Gavin! Pray that his seizures will stop and that he will come back to us as he was, or pray that God calls him home to be with Him where Gavin's suffering will be no more! Pray that our family continues to look to God for all that we need and that we not be consumed with worry, knowing that God is in charge! Pray for wisdom for the health professionals! Pray for our extended family, knowing that they are suffering with this too!

Thanks for your prayers and support! They mean more to us than you will ever know!

Love, Alicia

Gavin continues to improve in some areas, but not in others. He started having seizures yesterday afternoon and continues to be having small ones today it seems. They did a CAT scan which showed good results. They also did an EEG of the brain which is uncertain. They hoped to do a MRI to get better results, but Gavin has a pacemaker and since the MRI is like a huge magnet it isn't a good idea to do when someone has a pacemaker. So, now we wait and see if he continues the seizures and if it has had an effect on him neurologically. He is on anti-seizure medication for now. This new problem has us quite worried.

I was praying that God take Gavin home yesterday, but since he has improved so much in some areas, (Such as, maybe getting off the vent in the next day or two and all the blood work numbers are improving.) I see God isn't ready for that at this time. We have been struggling with how much intervention is too much concerning keeping Gavin alive. We had a good talk with our Pastor today and feel now that we need to keep going as long as there is uncertainty. Uncertainty meaning; that as long as there is hope that they can correct health issues and that Gavin's life can be saved, we need to keep fighting with Gavin and leave the rest to God to decide. This is a comfort to us.

I've decided to get proactive about some of the things that could have been prevented with Gavin's 'care'. I know that things that were missed can't be changed, but I want to fuel this anger that I have into something positive. So, I'm hoping to start a movement or foundation to ensure that there is less of a chance of this happening again. I have already thought of a name for it: Gavin's Voice.

I am so angry about what has happened with Gavin this week! This shouldn't have happened! I feel it is so important that health care workers take the time to HEAR the patients and their families and not miss something because they weren't listening! There are a few simple things that could be changed to ensure this. Like, having more continuity of care. When so many doctors are seeing patients each week it is so easy for them to miss something because they can't compare the patient today with how they looked yesterday. Plus, they send out evaluations after the hospital stay is over to see how the patient feels their stay went, Why not do this during the stay too? This way problems could be fixed during the time the patient needs treatment, instead of when it's too late for that patient. They could ask questions, such as: Do you feel anything is being missed with your care? Are you being listened to? Are we as health care professionals communicating well with you? I feel this would leave a smaller chance for error to occur. No doctor can read a patient's whole chart everytime they see a patient and they are human too. So, keeping the patient and their family involved and getting their impute would help make sure that the doctor knows the patient's history and help prevent errors. Sorry for rambling! I guess I'm passionate about this topic right now! If you have any suggestions for me, please let me know.

Thanks for your prayers and support!

Love, Alicia

Gavin is hanging in there. He is hooked up to tons of machines again and kept sedated most of the time. This is sooo hard to see after seeing him so well last week! His kidneys and bowels started giving out, but seem to be coming back again. His blood pressues have been quite low and he's been getting lots of support for this, plus lots of blood and platelet replacement.

Yesterday I reached an all time low since this all began. I can't see him suffering anymore! I have always concentrated my prayers on healing him, but yesterday I just kept praying that God would take him so that he wouldn't have to fight and suffer anymore! It is breaking my heart! I'm sobbing as I type this, it is just getting to be more than I can take! Please pray that God takes away Gavin's suffering; whether that means healing him and making his life worthwhile or calling him home to be with Him. Because right now Gavin's life is horrible! Our family life is stressful too! We are constantly running from work, hospital or kids. Our boys' lives are chaotic too. Pray that they feel cared for and loved too!

Thankyou for your continued prayers and support!

Love, Alicia

I'm really struggling today! I always try to look for the positive in everything, but there isn't much positive lately. Gavin is very sick! They say they need to pull him through this complication and try to get him back to as healthy as he was, which wasn't very healthy to begin with, then see if this has taken too much from his body. The outlook on his life is not good. There are so many things wrong with his little body! Even if he pulls through this illness, there are so many things that could put him back on the vent in the future. He has many struggles ahead! I talked about quality of life before and how looking at everyone's quality of life is more important than just looking at Gavin's. But, today I've been told a lot and I'm finding it hard to feel comforted by this. I know that God has a plan and it will be fulfilled, this still comforts me. But, when I see Gavin having to go through so much and the effect this all is having on us, our boys and other family members, it's hard to see the big picture! Please pray for Gavin! Please pray for our family! Pray that Gavin doesn't have to struggle and pray that we can feel at peace with all that is going on. Thankyou!

I had some good conversations with a few doctors and nurses the last couple of days. I expressed my concerns and frustrations. They were very open to listening. I was able to get my frustrations out and they were very supportive and honest with me. I am feeling better about this and feel that this experience will be beneficial to future families and us too.

Thanks for all of your support! We appreciate all that people have done for us through this trial.

Love, Alicia

Last night brought more excitement. (If you want to call it that!) After I picked up the boys from Grandma and Grandpa's house, on the way home, Caleb vomitted all over himself, his carseat and the van! I felt so bad for him, but found this to be 'the last straw!' After getting the boys to bed and while cleaning up the mess, I decided something. I know that God doesn't give us more than we can handle, but I was thinking that He had a little too much faith in my abilities and strength! Everything was really beginning to wear on me! This morning I'm feeling much better again. It might have been that I had only gotten 5-6 hours of sleep in the last 60 hours! Despite Caleb getting sick a couple more times in the night, we were able to sleep fairly well and this has helped my overall outlook! Caleb is feeling much better, but still not himself.

Gavin had a fair night. They were able to come down on the vent a little, but they are keeping the rate somewhat high to help his heart and body rest from all the stress it had to go through. We are still waiting on cultures to grow to see if there is any known infecton. They did find some bacteria in his stool and he is on a couple of broad antibiotics to treat whatever else he might have. I feel that his being so dehydrated had the biggest effect on him being back on the vent. The I.C.U. nurses and docs couldn't believe how dry he was and that he had only been on a very small amount of extra fluids while on 'the floor.' Please pray for my patience and Gavin's health! Thankyou!

I continue to trust that God has Gavin and us in his hands and that we will get through with His strength and grace.

Love, Alicia

Gavin is back on the vent. It is actually a relief in a way. The last 2 days have been hard watching him suffer and now he's breathing well, resting and peaceful. It is still hard to see though.

They are running numerous tests and are doing a spinal tap on him now. They've received some results, which show everything to be normal so far. So, now we wait and PRAY!

While waiting in the family room while they intubated him again, I was obviously feeling worried about Gavin. Then I overheard a family talking. They were having to make the decision to "let their girl go" today because she was brain dead. What a perspective I got! Here I was upset about Gavin and they were having to say goodbye to their loved one! I broke down then and offered to pray for them. It is so hard seeing the suffering that goes on in hospitals. One thing that keeps me going is something that our Pastor said a few months ago to me. He said that he didn't like it when people talked about the quality of life of one person. Like, when people say they wish their loved one could die because their quality of life is so poor. You might say this about Gavin, but our Pastor said we had to look at the quality of life of the whole community. God is using Gavin's quality of life to better the quality of life for so many. He has a purpose in Gavin and it will be fulfilled! So, though it is hard to see Gavin go through so much in his life, I know that the quality of life for others is improving with God's plan! I am thinking about this a lot today and it is a comfort for me!

Keep Praying! We're thankful!

Love, Alicia

Gavin needs lots of prayers right now! They are in the process of putting the ventilator back in! His breathing became very labored a few hours ago and his fevers are still very high. They say his heart and lungs are looking the same or better, so there must be an infection somewhere and his body is compensating. It is too much work on his body, so they are going to take the work away by ventilating him while they try to find out what's going on with him. Please pray for the little guy and that they can find out what's causing this soon. Thanks for your support!

Love, Alicia

Where do I start?! Gavin has had a rough 24 hours! He, nor I, have gotten much sleep. He had a couple of tests yesterday, which came back normal, but now they are again puzzled by what's going on with him. He was quite fussy yesterday and ended up running a 106.5 fever during the night! He was so agitated and just couldn't sleep. It was horrible for me to watch again. He's been so content and peaceful lately. I asked the resident to give him something and she didn't want to deviate from "the plan." I told her I didn't care about the plan! He was having such a hard time and had been through so much, so what's a little bit of help going to hurt? She still refused, so I said that I would take him home then if they wouldn't give him anything. I talked them into Motrin, but that didn't help. Finally she said that she understood and allowed him to have Morphine. This helped him sleep just a little, but once he was awake he was much calmer at least! He's still running a high fever and they are going to check for a virus he could have.

He is also very dehydrated. He has been on a dieuretic 3 times a week, but when we got to this hospital they switched it to 2 times a day! They did this even though I told them that I thought it was too much. So, now he's dehydrated, like I thought he would be. They are going to put him back on his original dose and schedule. Hopefully this helps. Please pray that Gavin comes back around to his smiley self and starts to feel better soon!

On a lighter note, I'll leave you with a cute Caleb story! He was up here a couple of days ago and looked out the window. (We are on the 7th floor overlooking the city.) He said "WOW! I can see the whole world from here! HI GOD! Gavin, say HI to GOD!" Isn't he precious?! He's so much company here and is quite the helper too! I'm thankful for this!

Have a great weekend! Keep those prayers going!

Love, Alicia

I am overwhelmed! I'm overwhelmed with emotion, thankfulness and God's wonderful grace! So many people have supported us over the last few months! We have been sent hundreds of cards, had meals made for us, been given many gifts, have had wonderful caregivers for our children and so many prayers sent our way! This week we were given a beautiful prayer quilt made by an old friend that we haven't seen in years. (Thankyou Melissa!!!) It has strings on it and people who've said prayers for Gavin can tie a knot in one of the strings. What a wonderful gift and reminder of how many have prayed for Gavin! Then yesterday, some friends from our church stopped by to give us something. It was a gift bag full of cards, gift certificates and money from many people from the congregation. I was shocked and overwhelmed! I was able to hold the tears in until they left, but Oh did they come! I keep asking myself why so many people have been so good to us! Then I read in my devotions last night about why God sends good things our way. It said because He loves us! That's why He gave His Son up to die for us and save us from our sins! Because He's a loving God and cares for us! Amazing!!! So, I say THANKYOU to God and I say THANKYOU to all of you for all that has been done for us!

Gavin has been very peaceful and happy. I got THE BIGGEST smile yet last night! I guess he's thankful too! He does have an antibiotic resistant bacteria in his urine. Please pray for this to go away. He also seems more lethargic than normal which worries me a little, but maybe he's just feeling better and can sleep easier? They were a little concerned because he lost a little weight too. But, of course, they are concerned when he gains it too! He just can't please those doctors I guess!

Keep up those prayers! We appreciate them! Have a great day!

Love, Alicia

You might remember back in March when I said that Gavin had had surgery in JAN, Feb, and Mar and that I hoped not April because I was booked for the month. Well, God had different plans! Gavin will be having surgery next week to put in a permanent feeding tube into his abdomen and also to wrap his stomach to help prevent reflux. This will be a positive surgery because Gavin will no longer need the NG tube down his nose and throat and he won't be in pain with refluxing. So, although we don't want him to have to go through more, it will be good in the long run.

Gavin settled into his new room on the floor well. He had a great night except for running a temperature again. When we moved into the room yesterday Caleb made sure that the nurses were on the ball. He went into the bathroom and pulled the help cord right away! I heard a siren type noise and then a couple nurses came running! So, we are confident that Gavin will be well taken care of! They might just get him well quick to get this crazy family out of there!

Hope you have a great day! Keep up those prayers! Thankyou!

Love, Alicia

Gavin is moving closer to home today! He is going to be transfered to "the floor." This means that he is doing well. They said yesterday that he is stable cardiac wise and only has feeding issues to work on. We are happy about this, but now it will be harder to be away from him. I'm a little concerned about this because I already feel like a tornado running from one responsibility to another, but we'll manage somehow. God will continue to give me the strength as He has so far!

Gavin's upper GI test showed that he does have reflux, so they are moving his NG tube past the stomach today to help prevent reflux. This should make him more comfortable and assure that all his nourishment and medicines stay down. Considering all that he's been through, withdrawl, continuous vital checks, and reflux he's a very good baby! He rarely cries anymore and is very easy going! What a trooper!

They are still deciding what to do long term with the feeding tube and reflux issues. He may need another surgery. So, he'll most likely be in the hospital a couple more weeks! We've stopped asking how much longer it will be. It's just a way of life now.

Thanks for your continued prayers! We appreciate all that you've done for us!

Love, Alicia

Gavin is going to have an upper GI test done today to see how bad of a reflux he has. If it's bad enough they will move the tube he is being fed through past his stomach so that there is less of a chance for the formula and medications he receives to come back up. We've also talked about having a permanent tube placed into his abdomen (called a G tube or J tube) to give him his nourishment and meds through. This would mean another surgery, but in the long run it would be better for Gavin and us. This tube would allow for Gavin to not have a tube down his nose and throat, which would make him more comfortable, I'm sure!

He was a little more fussy than he has been the last few days yesterday. It may be due to refluxing which hurts. Please continue to pray for Gavin. Thanks for your support!

Caleb and I are headed up to spend the day with the Vinster. I'm sure Caleb will keep Gavin happy and distracted!

Have a great day! God is Good!

Love, Alicia

Gavin is probably feeling the best he has felt in four months! He looks the best he has in a long time too! He has been giving out lots of smiles and seems very content! What a blessing! They are still playing around with his cardiac meds, trying to get the leak in his mitral valve managed as good as they can until surgery can be done. He has a lot of growing to do before the smallest valve they make fits into his heart. We don't know when this will be, but they hope that Gavin can do well, thrive and hold out until then.

Yesterday one of his cardiologists said that Gavin was still very fragile and that he is on industrial strength medication to keep his body running as it should. They seem quite concerned and say that a bad cold or pneumonia could put him over the edge. It will be up to Gavin on how well he does. The tone we hear from medical staff here is so different from what we heard in Ann Arbor. There they were excited and hopeful about Gavin's progress, but here they just seem worried. The cardiologist said it's all relative. They just didn't see Gavin at his sickest and how far he's come, so maybe that's why. We know that Gavin's a fighter and we especially know that Gavin is in God's hands. He has given Gavin to us and He could take him from us, but we trust that God will give us the strength whatever His decision is. We will continue to put our faith in Him and fight with Gavin as long as we are blessed to have him in our lives! I always have been so fearful of giving up our children to God. But through this experience I have been given a far greater faith than I could ever have imagined! I now say thankyou God for the blessng of our children and give them back to God knowing that they are His and that He loves them more than we ever could and will get us through whatever His plan is for them and us. This is such a relief! Of course, we still worry, but feel more at peace than we ever have!

Please continue to pray for Gavin and his long road ahead! Thankyou!

Love, Alicia

Gavin reached a big milestone yesterday! He no longer has any I.V.! He has had some form of one (at one point, three!) since December 26th! We are so happy about this! This means that he is only on oral, or in his case, NG tube medicines. So, an I.V. is no longer necessary! He is doing well. He's been sleeping good and is calm and content. The doctors are still playing around with his meds. He is struggling a little with this. He has fluid in his lungs, but they are working on it. I was quite frustrated, but now see that they have good reasons for what they are doing. I just pray that Gavin's body can tolerate these changes. I do know that God has placed Gavin in this hospital for a reason and I do see progress being made! So, I must remember (Again!) that patience is a virtue and to have faith in God's plan! He knows better than I do and the doctors here are showing me that they know more than I do too! As Caleb would say, "Rats!" They are also doing better at considering my thoughts and communicating better with me. So, I once again, feel at peace with the care he is receiving. I am thankful for this!

Thanks for your continued prayers and support! Have a great weekend!

Love, Alicia

Well, Gavin turned the corner and was very comfortable and happy yesterday! Yay! Maybe they know what the are doing here after all. Although, I'm still questioning some changes that they've made. They took him off a couple of dieuretics and he's not peeing much. This is bad because all the fluid goes right to his lungs in him! Gavin isn't the simple type! Please pray for their knowledge and for my having patience and that Gavin handles things well while things are figured out. All he needs is another set back!

Caleb has been going to the hospital with me this week during the day and has been very good and helpful. Yesterday he had Gavin smiling and very interested in him! It's so good to see this! Caleb also helped when Gavin's machines started beeping. He opened the door into the hall and asked a nurse "Can you come stop this beeping noise. It's annoying!"

It is so good to be home! Last night Joel spent the evening at the hospital with Gavin. So, I was able to spend time with the boys. It was fun, but they were being really naughty and disrespectful at one point. So, I punished them and guess what Jacob and Nolan said in unison? "Thankyou mom!" I said "For what?" Jacob said "For punishing us, it's good for us." Nolan said "Yeah, it means you love us!" I was shocked! Crazy kids! But, obviously very smart! I figured that they wouldn't appreciate having mean old mom home, because this means the 'vacation' is over. Joel is a wonderful father, but he can be a softie when it comes to demanding respect. I guess I was wrong and the boys are happy to have me back anyway!

Have a great day! Thanks for your continued prayers! God has blessed us with you!

Love, Alicia

Gavin ended up having a miserable day yesterday! He was quite fussy and couldn't seem to get comfortable. He also had a temperature betweem 104-105 most of the day! He normally runs high, but never this high! After finally listening to me, they gave him something that helped him to sleep and was much better in the evening. But, he's still running a temp this morning. They were making so many changes. I really hope that Gavin gets through this period quickly. It may be good what they've done in the long run, but right now it doesn't look that way to me. I will leave them in God's hands knowing that He knows what's best for Gavin! Please be in prayer for Gavin and the doctors too!

It is great to be home! Although, it is very hard balancing being at home with the boys and their schedules and being with Gavin! Be in prayer for us in this department too! Thanks!

Have a great day!

Love, Alicia

Gavin seemed to adjust to his new 'home' nicely yesterday. He was a little fussy, but no more than normal. They decided to make some major changes with his meds. So far he is tolerating the changes. They seem to be a lot more aggressive at this hospital. They may regret this, knowing Gavin's record. But, maybe it will make it easier on Gavin too! Please pray that the changes they make are good ones and that Gavin tolerates everything. Gavin decided to make them work and prove themselves right of the bat! He decided he'd had enough with his PICC line, and got it to leak (blood at that!) So, they had to pull that out and start a regular I.V. in his foot. They taped and wrapped it up real good hoping it will last until he no longer needs meds by I.V. So now his leg looks injured or broken. We decided to tell the boys that he injured it while parachuting out of the helicopter. "What?! He parachuted out of the helicopter?!" But, then Jake being smart enough said "He did not!" So, it's good to be back! But, VERY BUSY!

My way back to G.R. yesterday was an emotional one! I cried half the way home. I cried about leaving some wonderful and caring people that we got close to while there. I cried about the uncertainty that we were moving towards. I cried for sweet Cody's mom who has suffered such a loss! I cried for the patients that we left behind, like the sweet boy that Gavin roomed with the last week who was so polite and always said "thankyou ma'am" and cried when his mom would go away, and reminded me of Jacob a little. I cried because I'm not always good with change. Oh. and I cried when a kind person let me cut in front of her on the expressway, because people can be so kind! Yes, I was a wreck. I'm sure Joel is glad that I got it out of my system before I got home! One thing that I know for sure is that this experience has changed me forever! I will never forget the wonderful Grace of God, the amazing courage of children and their families and how kind and generous people can be! So, though a very trying time, I am thankful for it!

Have a wonderful day! Continue o keep Gavin and the other courageous children in your prayers! Thankyou!

Love, Alicia

Gavin is free! He just left, by helicopter. His brothers will be so jealous again! Last time they said "Lucky!" I just wanted to let you know he's headed 'home'! I'm taking off now. Pray for our safety! Thanks!

Also, just a note on visitors for Gavin. I know that a lot of people want to come see him, but we are asking that only our parents, siblings and grandparents come to visit for awhile. He has busy days and sometimes fussy ones. We want him to be able to concentrate on getting off those meds and home again. Plus, we are kept quite busy with Gavin's care too! Thanks for your consideration!

I meant to update you yesterday about former patients that I asked you to pray for. Last I heard M was doing well at home and glad to be there! Unfortunately, C passed away Saturday morning. His aunt called to let me know. Yesterday when I woke up I thought, "How wonderful for C to be able to spend Easter with Jesus!" I know it will be very hard for his mother. She spent every waking moment caring for him so WELL! Please continue to be in prayer for these families! Thankyou!

Well, I'm off! So long Ann Arbor! Have a great day!

Love, Alicia

Happy Easter! Gavin is having a great day! Well, besides getting quite mad with the three dirty diapers he's had this morning! He has never liked these! He's snoozing now. We just got back from breaking out for the first time! We got to go on a stroller ride to visit the old unit he was on. We wanted to say our goodbyes and thank them for doing such a great job with Gavin. We never had grumpy nurses over there, that I can remember anyway! It was such a great feeling getting him out of his room and walking around! We had to take a lot of stuff (oxygen tank, 2 I.V. pumps and a feeding pump), but it was great all the same!

I have to share my wide-eyed wonderment thoughts that I had today. You might think that I'm crazy, but I'll share anyway! Have you ever thought about how AMAZING our bodies are?! God thought of everything! We eat and drink, and just think about all that our bodies have to do with it! Our bodies know just what do do with the nourishment we give it. We don't have to do a thing! I've been thinking about this because there are a couple of patients here getting dialysis treatments. For most of us our stomach, kidneys and livers do all of this for us and we don't even think about it. We are like a well oiled engine, except we (most of us) don't need oil changes every 3 months and we last a lot longer than the average car! Yes, I have too much time to sit and think, but it is quite amazing what God created in us and everthing else He created! Remember to thank Him today! I know that I have!

Have a great day! Thanks for your prayers and support! Oh, I have to say something about the Baker's idea for dealing with nurses in a diplomatic way. I LOVE it! It is very clever and informative too! Thanks! Joel and I got a good laugh out of that one!

Love, Alicia

Whoa! I didn't mean to get you guys going yesterday! I knew that the 'Mama Bear' got her claws out to protect her cub, but I guess Gavin has a family of 'bears' around to look out for him! I just want you to know that Gavin and I are doing fine and that the nurses here are great! I do plan on mentioning something before we leave to a supervisor. Joel had the best response, I thought. He said that when they complain about Gavin crying that I should say something like: "Oh, you don't want him to cry to let you know that there is something wrong? I'll teach him to press the call light and then have him tell you what he needs. I'll get right on that!" This might get their attention!

Gavin is having a good morning and slept well last night. Everything is in place to go home on Monday, as long as there is a bed available in G.R. We are getting excited, but a little nervous too. I'm just worried about having time to be with Gavin at the hospital and be there for the boys too. It's been easy here because all my time can be devoted to Gavin. I miss the boys and worry about them. Now I won't have to do this, but will probably be feeling stretched too thin. I know I'm getting ahead of myself and that I need to continue to trust and lean on God for the strength! I read in a book that I've been reading about submitting to God's will in all things. It said how sometimes it's easier to do this in times of great trial, but that it can be harder to do in everyday trials of life. I pray that I can always feel the tremendous 'full' feeling that I've felt through this trial. I know it was God's grace that gave me this feeling and I want to continue to see this when I get back to a more normal existence. We just have to look for God's grace in everything we do and try not to let the little things get us too down. This is what I've been praying about a lot lately!

Have a blessed Easter weekend! Thanks for your continued prayers and support!

Love, Alicia

Grab a bowl of popcorn and a comfy chair! I have a feeling this is going to be a long one! Let me remind you that there are TERRIFIC nurses. The pain service that has been taking care of Gavin has meds to be given when he is fussy, because he needs them occasionally after being on them so long and now being taken off them. They keep giving this info to the nurses. I ran into a mom that I met at Saint Mary's hospital this week. She was here for an appointment for herself and amazingly we bumped into each other in this huge place! God's timing is perfect, isn't it?! Anyway, she told me that she has gone through withdrawals when being taken off narcotics, as Gavin is. She said it was horrible! She felt anxious, jittery and exhausted, but unable to sleep. This gave me a mental picture of what Gavin is going through. Not a good picture, but I'm thankful to see more clearly what he's going through. Now I know that I need to be a good advocate for Gavin, more than ever! Let me just give you another 'picture': Gavin is on 30 mcg of Ativan and off Morphine now. He was at one time on 220 mcg of each! They usually put babies on 30-40 of each after a surgery and this suffices. Not for Gavin! So, he was on a lot for a long time! Of course he's going to have these troubles coming off from them! Poor little guy! It breaks my heart! He really is doing well considering! I'm so proud of him!

Speaking of being proud, his Physical Therapist said he was impressed with Gavin's progress! He said that Gavin had a long way to go, but that considering how long he was down, he was doing very well! He said the most helpful thing that can be done for Gavin is to hold him and bounce him around like you do with most babies. This helps the most with developing these skills. I can do this easily! He also said that it will be harder for Gavin, because he has Down Syndrome. He said just having this, besides all the other issues Gavin has, is difficult for him to develop. He gave me an example of how it feels to have Down Syndrome. He said, "You know how you feel after being up real late or before you come down with an illness (exhausted and blah), this is how it feels for people with Down Syndrome all the time! So, it takes more effort and gumption to want to get ahead. He said it's a good thing that these kids seem to have a lot of feistyness, because it helps them in the long run. All I'm thinking is "Oh Boy! We're in for a long road ahead! Gavin will be feisty due to having Down Syndrome, red hair and have you met his brothers?!" I'm up for the challenge though! But, be forewarned, I may need to vent a lot in the future! Thank you God for our wonderful support system!

Thanks again for listening! You are such a blessing to our family!

Love, Alicia

Guess what the nurse practioner said to Gavin this morning? She told him that he was her healthiest patient right now! Now, keep in mind that she doesn't cover all the patients, but it sure was nice to hear this! We've been told the very opposite before about him! Gavin does look great today! He's very calm and happy! No new changes except going down on his meds again. Hopefully he doesn't protest!

Gavin tried pears today. I think these are his favorite so far. He gave me the BIGGEST smile after a couple of bites! This is something, because he is VERY stingy with his smiles! I was just telling him that he owed me one, because it had been a couple of days since the last one I saw! I suppose I wouldn't have too many smiles with all he has to go through either! It sure is nice to see them though!

Hope you are all doing well! Thanks for your continued support! God has blessed us with you and so much!

Love, Alicia

Gavin tried bananas today! He liked them, but I think he prefered the peaches. Although, it might be because he was tired, he fell asleep right after eating them. He is doing well except for being a little fussy, most likely from withdrawl. Speaking of fussy, he had a terrific evening and night yesterday! He slept soundly and when awake, was in such a peaceful mood! This happens throughout everyday, but yesterday it lasted for about 8-9 hours. It's so good to see him this way! Of course, then I started worrying that there was something wrong with him! I worry when he's fussy and then I worry when he's happy! Never happy, Huh?!

Here's an update on one of the nurses. She has been so nice the last couple of days! I figured that I should praise her for her good days too! Maybe she was having a hard time last week?

We are awaiting a phone call from our cardiologist's office today. We are trying to switch cardiologists. He seemed to miss a lot with Gavin and didn't think he was as sick as he is. We had contact with a couple others in the office and felt they were very on the ball. We hope that one of them will take Gavin on as their patient. Gavin's a tough one, so hopefully they are up for a challenge!

Hope you are all doing well! We appreciate all that you've done for our family and especially your prayers!

Love, Alicia

It's me again! We just learned that we won't be headed to G.R. this week. Gavin's cardiologist is away for the week and isn't there to take him back on. So, we're stuck here for a few more days! I'm fine with this, although it made it harder to say goodbye to the boys and Joel. They left about a half hour ago. The nurse felt bad for me, but I said "what's a few more days when you've been here for three months?!" I'm learning patience I think! I just read about this in my inspirational book, from Galations 5:22. It talks about how God demands patience from us, but that he also offers it to us. We just need to pray for it and trust his plan!

Nolan wants everyone to know that he lost a tooth today! He's been working on losing this one for awhile and very happy to have finally lost it! Caleb is jealous though. He says this means that Nolan is growing and he wants lose one too! Oh, to have the problems of a four year old again!

Thanks for your prayers! Please pray that the guys make it home safely and that Gavin handles his med changes well and keeps progressing!

Love, Alicia

Gavin had his swallow study this morning. He did fine at first with bottle feeding with liquids, but then started to aspirate into his lungs. This isn't good. Then they tried thickened liquids in the bottle. He didn't aspirate this, but had a hard time sucking the thick liquid. This isn't good either because with having heart issues it is too much work already just with sucking in general. So, additional work is too much for Gavin. This means that Gavin cannot have a bottle! Poor guy, he loves it so much! The good news is that they tried feeding him baby food (peaches) from a spoon and he didn't aspirate this and he loved it! This is easier for his heart to handle, because it doesn't take much of an effort. So...he will continue to be fed his formula through the NG tube for most of his nourishment and eat baby food by mouth. He just knows what's good and what's not! That formula tastes nasty and peaches taste good! I told you he was a smart one!

They are still trying to get us to Spectrum tomorrow, but nothing is finalized yet. Hopefully it will work out some time this week!

Gavin's still a little fussy today. Jacob asked, "Why?". I said, "Well, he's in the hospital, they are taking away his meds that make him feel good, he has a tube down his nose, oxygen up his nose, he's hungry, etc." So, pick one or all of the above! Some day life will get easier for the little Vinster!

The boys seem to be enjoying themselves here. Between the activities that they put on, the computers, the toys and swimming at a hotel's pool that is owned by the hotel we are staying at, they are keeping busy! So, I guess it's not such a bad Spring Break after all!

Hope you are having a great day! God is Good!

Love, Alicia

Gavin is doing well today! He's still just hanging out. They said they were working on us heading home on Wednesday. Dr. Bove needs to talk with Gavin's cardiologist in G.R. to make sure he's willing to take him back on as a patient while Gavin still needs to be hospitalized. They also need to make sure that there is a bed open for Gavin at Spectrum. Gavin has his swallow study tomorrow morning and if there are any issues that need corrected they can be taken care of at Spectrum. So, it looks like we are headed home soon! Please pray that the move is a positive one and that the hospital there makes wise decisions on Gavin's behalf. We hope that they can understand that some of the issues he still has are ones that he will continue to have until his valve can be replaced and that it doesn't prevent him from going HOME soon! We continue to trust in God's plan and put Gavin's life (and ours) in His hands!

The hospital is having an opening day party for the Tigers. They have a few T.V.'s set up, hot dogs, popcorn and activities for the kids! It is so nice all that they do here for the patients and their families! We will miss this place, believe it or not! But, we are definately looking forward to moving on!

Hope you have a wonderful day! Thanks for your prayers!

Love, Alicia

Not much to say today. Gavin is doing well, though a little fussy at times. They decreased his methadone so maybe he's objecting their decision! Otherwise he's doing well and just hanging out.

The boys and Joel just got back from "an exploring adventure" outside the hospital and had a great time. The weather is beautiful!

I have another baby for you to pray for. Michal's mom met them here. The baby's name is Aubree. She has a very bad infection and isn't doing well. So, please keep this family in your prayers too!

Hope you have a great day! And, remember, from my readings today: "The Lord is my shepherd...Psalm 23" He is leading and caring for all of us! He is with us and will comfort us! Thanks for your continued prayers and support!

Love, Alicia