Saturday, March 31, 2007

Gavin is having a very good day today! He slept well and is quite happy! Maybe he's trying to impress dad and all the brothers. They are all here today and will be here through Tuesday. No new news on Gavin really except that O.T. gave him some thumb splints to wear. They keep his thumbs from tucking into his fists. When they are tucked in it makes it harder to grab for things. He is an escape artist though, he still gets those thumbs free and tucks them in! Little stinker! We're going to call the splints his batting gloves!

Great news on Michal! He's going home today! He is still vomiting and going home with a nasal gastric tube for feeding, but otherwise doing good! His mom says they are excited, but nervous about heading back into civilization. I know it will be scary for us too! But, they will be fine and we're so happy for them!

Thanks for your prayers! Have a great weekend!

Love, Alicia

Friday, March 30, 2007

When we got here yesterday they asked me if we wanted to go back to G.R. next week. I got excited and said, "Of course!" Then they added, "To Spectrum Hospital." I still was interested! So, hopefully early next week they are going to try to get Gavin transfered. They said that they knew we were anxious to get home and that it could take another 2-3 weeks to get Gavin comfortable enough on the withdrawl meds, so....I think it's a good idea because the family can be more together, but I'm a little concerned that he won't get continuation of care. Each hospital does things differently and I hope that they don't change his meds and cause delay in getting home. Of course, maybe they have a faster method, who knows? I'm excited about the news and anxious to get moving! They might wait until Wednesday after his swallow study. They couldn't fit him in until Tuesday morning. Unfortunately, they don't want him to be bottle fed anymore until they know that he's not aspirating the formula into his lungs. He's not happy about this! Now that he got the hang of sucking again, he really wants to do it. He's always trying to suck on his fingers and hand and not too happy with just that! The pacifier does O.K. for awhile, but it's still not what he wants! Poor little guy!

Gavin is a little fussy today after a few changes on his meds and his lungs are a little guncky, otherwise he's doing well. Although, they are going to give him more blood because his hematocrit is low. They say it could be caused by all the blood draws that they do on him. Gavin had O.T. today and she said she's happy with his progress. It's slow, but he's moving ahead. He sure does get worn out with therapy though!

Michal is doing well. He may be off the oxygen for good if his oxygen saturation stays high enough and his swallow study showed that everything seemed normal. He just has to be able to stop vomiting and keep enough feedings down, then he can go home!

Cody was sent home under hospice care. They were gone when Nolan and I arrived yesterday. I was worried when I saw his bed empty, but his mom left a note for me with her phone number, so I'll probably call her soon to see how things are going.

Please continue praying for "the boys." We appreciate it! Have a great day!

Love, Alicia

Nolan says Hi and that he's having fun!

Thursday, March 29, 2007

If you don't mind, I need to vent! Let me start by saying that I know how hard it is to be a nurse!.....but I'm having a couple of issues with some of them in the moderate care area. In the I.C.U. we had such friendly and caring nurses for the most part, but in Gavin's new area there are a few that, I think, should not be working with babies and children. I try to give them the benefit of the doubt, but anyway, some of them are not friendly and don't take the time for the caring part of the job. I believe this is the most important part of a nurse's job, especially when working with children! Some seem annoyed having to comfort a crying baby and when they have to do anything extra. They only have 2 patients in moderate care and do stay mostly busy, but get plenty of help from parents. They seem to forget that the family and patients are going through a very difficult time and have emotional and even normal needs as well! Some get upset when a baby is crying and don't try to comfort them! Last night I called to check on Gavin and the nurse sounded real grumpy and said he's been throwing fits. I asked if she had tried anything and she said no, I don't have time! I asked a few more questions then said that I hoped she'd have a better night. I was upset when I hung up the phone, because I've had this problem with other nurses lately. Normally I would just be worried and not say anything, but I decided to call back a while later to see how it was going. I think this experience has taught me to be more assertive, which I'm happy about. I've alway been very shy and didn't want to 'rock the boat.' When I called she said he was doing better and I asked what she had to do to calm him down. She said nothing, he just finally stopped. So, I told her a few things that could have helped the situation, like pickng him up or putting him in the swing! You know, normal things you do for babies! I reminded her that he is a baby and needs comforting too! I think they forget this sometimes. The funny thing is Michal's mom and I were talking about this sort of thing one day when my sister was visiting. We were talking about ways to help the nurse and make sure that the nurse was O.K. and my sister said, "It's pretty sad that the parents have to comfort and take care of the nurse." I hadn't thought about it this way, but realized that we were more concerned about the nurses' feelings than our's and our child's! Crazy huh?! Thanks for letting me vent my frustrations! I know it's better to do it with friends an family than to take it out on the nurse, but I do think that I will write a kind and informative letter to the staff before we go home, just to put things in perspective and maybe help them see the emotional side of the patient. I do need to say that there are some terrific nurses on this unit and we appreciate them so much! In fact, I try to show it to them whenever I can. By, word or card or treats. I'm baking some cookie bars now to take back with me! I'm leaving this afternoon and bringing Nolan with me. Jacob and Caleb are going to spend the day with Grandma Doty at her work tomorrow! Then, Joel and Jake and Caleb will come to Ann Arbor Saturday to stay through Tuesday. It's spring break for the boys!

Gavin is doing well, despite throwing "fits." I would be throwing a couple too with all that he's gone through! He is off Morphine completely and taking Methadone for withdrawl. He slept great last night! Yea! They are going to do a swallow study on him this week to check for reflux. Michal is having this done today too because he keeps vomiting. So, keep them in your prayers please!

I want to leave you with a verse that was in one of Caleb's birthday cards. He had a great day, by the way, and was telling anyone who would listen yesterday; " I'm 4 years old and my name is Caleb." So proud! "This is the day the Lord has made; We will rejoice and be glad in it." Psalm 118:24.

Have a great day!

Love, Alicia

Tuesday, March 27, 2007

Gavin looks so cute today! I brought some onsies from home thinking he might tolerate them better than the 'girlie' gowns they have here, and I put him in one today. He looks good in clothes! He is also tolerating them! Everyone keeps saying, "Wow! He looks real good today!" I think it's because he looks so cute in his blue and white striped onsie! He's still doing quite well with feedings and seems to really like it! Most of the formula still goes down the NG tube, but they are impressed that after three months he's able to take as much as he does. He's doing well tolerating med decreases and doesn't seem to be having any withdrawl symptoms! So, pretty much all good news with Gavin! But, keep up the prayers! Thanks!

Speaking of prayers, I have some more to add to your list. Yesterday was a sad and stressful day around here. One of Gavin's neighbors in his room isn't doing well. He was born with a disease that most kids don't live past 4 to 5 years of age. He is now 9 years old. His mom takes such good care of him! Only about 3% of his brain is now functioning and he's semi-comatose. I think he's lived this long because he is so loved by his mom and well taken care of, not to mention the power of God! Anyway, his family was told that he probably only has 2 weeks to live. I feel so bad for them! His mom seems to have a strong faith in God and is coping very well, though very sad. She doesn't have support of her husband and, in fact, he told her he planned on leaving her because she doesn't have enough time for him because she's always taking care of Cody. Please pray for her and Cody! I've been trying to support her and she does have great support from her church family! They have been told that Cody was close to dying before and he's pulled through by the grace of God, so she continues to have faith and isn't giving up on Cody yet despite the fact that the doctors want to stop feeding him and just let him die! Her pastor came in last night to talk to the doctor and told him that they wouldn't accept that and now they are feeding him again. So, Big prayers for Cody today! Also, a boy passed away during the night after coding yesterday evening. It is very sad around here! So, pray for that boy's family too!

I'm coming home tonight for Caleb's 4th birthday tomorrow! I can't believe that he's that old! But, it's a good thing because our boys start to be easier around age 4. They go through the terrible twos and then the tyranical threes!(that's what Joel calls them.)

Have a great day! Thankyou for the prayers! God is so good!

Love, Alicia

Monday, March 26, 2007

Gavin and I had a great evening yesterday! He was very content and made some progress. The nurse he had last night thought we should try out the bottle again. It had been three months since he'd drank from a bottle! I have been worried that he wouldn't be able to figure it out again because he wouldn't suck on a pacifier when I tried and he wasn't the best at sucking to begin with. But I tried it and he did quite well! At first he kept pushing it out of his mouth, then I squeezed his cheeks together, like we used to do to help him get good suction, and he took right to it! He wasn't sure what to do with the liquid going in at first, but he figured that out too! This is a huge relief to me! Then, maybe, we won't have to feed him by the NG tube at home so much. What a blessing!

Gavin also is listening to his P.T. and O.T., because they said they really wanted to see him lifting his legs up to grab like babies do, and last night he started the lifting part and this morning was trying to grab them! Oh, how thankful you can be for the little, normal things! Once again, Momma's real proud! Daddy too!

Gavin still is needing a lot of dieuretics to keep fluid off his lungs, so this is my prayer request for the day. He will need them at home, but we need to get down on them and have them all be given by mouth before we can leave. Right now he is still getting some of them by I.V. because they work better and faster this way. So, please pray that he can tolerate the change to oral doses and that he continues to make progress! Thankyou!

Michal is doing good, but still having some withdrawl and lung issues. He has been vomiting and his lung doesn't stay inflated all the way. They were talking about being able to leave in a couple of days, but now they aren't sure. Please continue to pray for him and his family!

I continue to be amazed at God's grace and am very thankful for this! I read today from 2 Corinthians 12:9. It says: "My grace is sufficient for you, for My strength is made perfect in weakness." I know that it is God's grace and strength that Gavin is receiving to make the progress he is making. I am so thankful for this knowledge and blessing! I pray that whatever you are going through, that you can feel it too! What a relief!

Hope you can enjoy the beautiful weather(that is here at least)and that you have a great day! Oh, by the way, Gavin must have heard me complaining about him not sleeping much because he slept all night except for about half an hour! Yea! I hope he keeps it up!

Love, Alicia

Sunday, March 25, 2007

I'm back with Gavin again. He's doing well today. I guess he was fussy yesterday, but fairly content today. Grandma and Grandpa O. visited with him all day yesterday, so I was glad he got some loving while I was gone! I think we are going to have some issues with Gavin when we finally get him home. He doesn't really care for clothes anymore. I put him in a little hospital gown before I left on Thursday and was told by his nurse later that he acted really uncomfortable and got quite sweaty. After she took it off he was fine. Maybe that's why Gavin is taking his time getting out of here, he's waiting for summer so that he can go without a shirt! Also, he has become quite a night owl! He used to sleep so good at home.

In fact we had to wake him a lot of the time to feed him. Now he likes to stay up and play most of the night! Oh well, at least we'd be home! I hope you are all having a great Sunday! Thankyou for your prayers! Continue to pray that Gavin tolerates med decreases and that his lungs stay clear!

Have a great day!

Love, Alicia

Thursday, March 22, 2007

Gavin continues to do well so far with med decreases. I told them to just go down on the medicine, but make sure that they don't tell Gavin what they are doing. Maybe we can sneak it by him, probably not though, he's a smart one! He has been sleeping well and when awake quite happy, so he's tolerating things well. Thanks for the prayers! Please keep it up!

If it weren't for the high meds he's on and feeding issues we would probably be headed home soon. But, we'll just have to be patient!

I'm headed home this evening. Please pray that Gavin is a good boy for the nurses and continues to do well and have no complications! We are so thankful to finally be seeing the light at the end of this very long tunnel! Although, Gavin still has a lot of work ahead of him and future surgeries. But to go home for awhile will be wonderful! Whatever the future holds for our family, I know that God will give us the strength and grace needed!

I hope you are all doing well. Thankyou for being a part of our lives and for all your support!

Love, Alicia

Wednesday, March 21, 2007

Gavin did well with the changes that they made yesterday! They are taking him down on his meds again today. Hopefully he will continue to tolerate them taking away the drugs that he has become quite fond of! He just had O.T. and practiced head, neck and arm control. He became worn out and is taking a nap now. We've been practicing the skills they taught us, but he's a little more sleepy today so he's not participating as much as he did yesterday. Speaking of yesterday, I think that I got you and I a little too excited with my positive update. He is definately making progress, but "genious baby" might have been laying it on a little thick! You know how us moms can be! We think our children are the greatest! Anyway, he's not going to come home walking or anything! He has a long way to go, but at least he's moving forward. I'm so thankful to God for this progress and for peaceful days where Gavin does well and is comfortable!

We got his heart echo results back. It said that Gavin's heart function is good and that the mitral valve still has a moderate to severe leak. This is good though, because it means it hasn't gotten worse at least.

Michal gave his parents a scare last night. He is hard to sedate and calm down like Gavin, so yesterday he had been given extra medicine and it all seemed to hit him at once. He became too sleepy and wasn't breathing enough on his own! This cost him a trip back to I.C.U.! They were thinking that they might have to put the ventilator back in, but thankfully the CPAP machine was all that he needed. He's doing well now and earned his way back to the floor. So, continue to pray for him.

Thankyou for your prayers! Have a great day! It looks like Spring is coming! Yea!!!

Love, Alicia

Tuesday, March 20, 2007

Gavin is doing well again today. They went down on his medicine a little today and will go down a little bit more tonight. We'll have to see how he does with this. I told him that he had to give it up sometime, but he's still thinking about it. Hopefully he will tolerate the decrease better when they take it down at a slower pace. He is still being fed through a tube through his nose in which the formula has been going directly to his intestines. Today they pulled the tube back a little making the formula go into his stomach. We hope that he also tolerates this change. He has some reflux, we don't know how bad, and this change could make him more uncomfotable and cause him to vomit. So, today's prayer request is that he does well with these changes!

We've been busy doing some of the things we learned from P.T and O.T. yesterday. Some of it just involves play, so this is fun too! We play patty cake and he seems to really like this! Like I said yesterday, he is supposed to be doing so much more by now than he is, like reaching for objects, etc. He hasn't been doing this, but today when I put his mobile down close to him he was going at the animals with both hands, just after a day of practicing! Also, I swear he is trying to do patty cake by himself! Momma's so proud! Now I'm beginning to think he's a baby genious! Oh Boy, slow me down! Anyway, it's good to see some progress! I'm so thankful to God for these days! It fills my heart up!

Michal is doing well, but having a tough time with withdrawl symptoms too! It's really hard on his mom too! If it weren't for this he'd probably be going home real soon. Continue to pray for them as well. Thanks!

I might be going home for a night or two at the end of the week, depending on how Gavin is doing. Nolan has a little play at school and he and I would both like it if I were there to see it! So, another prayer request, pray that Gavin is doing well enough for me to go home! I keep you guys pretty busy don't I?! I really appreciate your efforts though! We are so blessed with you all!

Gavin says Hi and bye! We'll have to work on waving next I think!

Love, Alicia

Monday, March 19, 2007

Gavin is having a good day. He is calm, content and restful. This is so good to see! We are both more relaxed this way! He's having a busy day too! They did an echocardiogram on him to check the leak in his mitral valve and his heart function. We don't have any results yet. He also had physical therapy and occupational therapy, both in the same hour! So, he's worn out now and down for a nap. He has a long way to go to catch up with a baby of his age! Of course, he's been laying around sedated with hands tied down for months not able to do what a normal baby does. I learned a few things today to help him progress developmentally and physically. So, we are going to be busy. I told him no more lazy days! I'm going to be bugging him a lot!

I feel better today now that he is comfortable. I am tired of being here though. I'm beginning to feel caged in and had a hard time coming to the hospital today. But, once I got here and saw his little face and got busy with therapy I felt much better. I also read something that helped my attitude. It came from my devotional book. It talked about worrying and anxiety. It said that the word worry comes from a Greek word meaning "to divide the mind." Rather than keeping your focus on God, which gives us strength and a clear perception, it distorts our thinking taking away our energy and power. So, how do we stop? By doing our part and God can do the rest. Our part, it says, is to pray and thank God for everything. "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Philippians 4:6-7. So, I'm glad I read this! It's always good to get this type of reminder!

I hope you are all having a great day! Thanks for your continued prayers and support!

Love, Alicia

Sunday, March 18, 2007

Joel and I are calling Gavin a baby grizzly bear today. He sounds like he is growling when he starts to get upset. I must say, it sounds quite cute! Of course, it means he's starting to get mad, but cute all the same! He is having a much better day today! He also slept most of the night! What an answer to prayer!!! I was beginning to really worry about the little guy! He is still showing us that he is uncomfortable at times, but it's definately improved. We are so thankful to God for this break for Gavin and us!

We have been going to the chapel here at the hospital for services on Sundays. We heard a sermon on God being at work during illness. I thought this was neat since I had just wrote about this a couple updates ago. Joel and I were talking last night about how we know there is a reason for this and that there are lessons to be learned from this, but that we were beginning to wonder when the lessons would be through! I know!...In God's timing, but I have to say we are getting a little impatient. It is just so hard being here all the time and not knowing when 'life' can 'begin' again. The boys seem to be getting anxious and having issues as well. Please be in prayer for them and us! We continue to trust in His plan and know that He will give us strength to get through. We are thankful for this knowledge and thankful for your prayers!

Love, Alicia

Saturday, March 17, 2007

Gavin is a little better today, but not much. They gave him back more of his medicine and are going to take it slower this time. Just what we wanted to hear, slower?.....It feels like we've been here forever already! But, I hate to see Gavin suffer, so whatever it takes! This is much harder on us and maybe him than being on the ventilator for so long. At least he seemed comfortable then. We know there is a reason for this and this gives us strength, but he's been through so much already! Please continue to pray for him and us!

Michal has moved to the floor, so he's passed Gavin by and is doing quite well. He's having some feeding issues and spitting up a lot! So, he continues to need your prayers too. We are thankful that he is progressing this far though.

The guys made it here safely. They are enjoying some activities that the child life center is putting on for the patients and their families today.

Have a great day! Thanks for your prayers!

Love, Alicia

Friday, March 16, 2007

Poor little Gavin is having a hard time with withdrawls the last 24 hours! It breaks my heart to see him so uncomfortable. He just can't sleep for long and cries a lot more than normal. They believe it's due to coming down on pain medication. The pain service is working on making it more manageable for him. Please pray that he starts to feel better and more like his happy self! It is so hard watching him when there isn't much that I can do to make him feel better! It's brought me to tears several times! They also drew blood cultures to see if he has an infection because he is having fevers again. But, he does this often and it's usually nothing. A fever is also a sign of withdrawl.

Someone (Aunt Bev) wrote in a note to us that they had heard in church the message of going through difficulties. She wrote that when things are difficult, God is at work. This gives me peace that trials are not in vain. I know a few friends and family that are going through hard times now and hope that they can see the the work of God in their lives like I have seen it in ours. Like I said yesterday, He has a purpose for everything. I'm thankful for prayer and know that He answers them! I pray that your prayers are answered and am thankful for your prayers on Gavin's behalf!

Joel and the boys are coming tomorrow. I'm very glad for this! I miss them! Plus, maybe they can be a distraction to Gavin at this time. I know for a fact that those boys can be distracting! But, it might be just what the doctor ordered for Gavin and me too!

Hope you have a great weekend! Hope to see you all soon!!!

Love, Alicia

Thursday, March 15, 2007

Gavin is 6 months old today! He's also a little fussy today. He still has too much fluid on his lungs. But, other than that, he is doing well. He got his arterial I.V. line out today, so he continues to get lighter and easier to hold. Yea! We are getting used to our new 'home' and have had some really good nurses the last two days.

Michal is still in I.C.U., but only because there isn't a bed available for him in moderate care. He did give them a scare last night. His mom got a call saying they might have to put the ventilator back in. He had a few bad blood gases. He pulled through though. They think it was a reaction to a medicine. So, we are thankful he's doing well today!

I read in my daily inspirational book today about how God has shaped us according to our purpose in life. How even our little quirks have a reason. So, though annoying at times, I guess we should be thankful for them! He gives us all different skills and personalities to benefit in some way. We are all needed and God has given us what we need to meet His purpose. I started thinking about how I went to nursing school, but haven't used these skills for quite awhile. Of course, being a mom you use them often and I feel this is the best 'job' to have! Anyway, I have met at least 5 other parents here that are nurses as well. So, I believe God gave us these skills for the purpose of being able to care for our kids with serious illness. By the way, Michal's mom is a nurse. He has given us all a purpose and though we may not feel like we are making a difference, He has a plan for all of us! Boy! I'm glad I'm not in charge of all these decisions. I have a hard enough time deciding what to make for dinner!

Hope you have a great day! Remember God is using you for His purpose and look to Him in all your decisions! Thanks for your prayers!

The Little Vinster says Hi!

Love, Alicia

Wednesday, March 14, 2007

Gavin continues to do well! He seems to be more comfortable and having less withdrawl symptoms than he had been having. He does have more fluid on his lungs today, but they are going to give him more diuretic medication today and that should help. We also have been pounding on his back and chest with a little suction cup tool that helps move the secretions in his lungs, then he can cough them out. They call it "beating" him sometimes. I do it a lot to him because I want to keep his lungs clear, plus he actually seems to like it! When he starts to fuss this usually settles him down.

He continues to move around a lot! He gets his arms and legs going like crazy! Joel reminded me this weekend about how the other boys were when they were babies. Jacob always was moving his arms up and down like he was throwing a ball. We actually would put a little ball in his hand and he would throw it to us at a very young age! Nolan pretty much just sat there content until he was a year of age. He was so quiet and good. We always knew that where we put him he would still be there when we returned. Caleb was the kicker and jumper. He always had his legs and feet moving and was jumping as soon as he could walk. Now, Gavin.....he does it all! He's got his arms, legs, and even tongue going most of the time he's awake! He tires us out just watching him! But, it sure is good to see him active and fighting!

Gavin's nurse practitioner said they don't know how much longer Gavin will be here. It's up to him! Well, I know it's up to God! But, she said they are hoping by April, so we still have a way to go. Please pray for Gavin's continued progress, that he doesn't have any setbacks, that his lungs stay clear, for our family's patience and that he can be out of here by April! Thankyou for keeping Gavin in your prayers and for all your support! God has blessed us with so much!

Love, Alicia

Tuesday, March 13, 2007

The computers are finally working again! It's funny how much the families feel lost without them here. I guess it's because it's the only way to update and 'talk' to others while we are away. We all keep coming up to the resource center asking if they are working yet. Now I have an idea how Gavin feels, going into withdrawl, anxious! Poor little guy!

He is doing well today. No changes, but at least he's staying out of the I.C.U. One of the doctors said usually if they are going to go back it would be in the first 48 hours. He had occupational therapy today, yesterday he slept through it! They are working on tracking and grasping a toy. He doesn't follow directions very well, but then neither do our other boys! So we'll have to see if it's due to his having Down Syndrome, being kept sedated and ill for so long or if it's just in his genes! I do know that we have a long road ahead of us! He has so much to catch up on, plus his heart valve is still leaking quite a lot, which will make him easily tired out until it can be replaced. We thought we were going to come here, have the surgery and he'd come home (in "10 days to 2 weeks") all better. But it looks like he'll come home again with oxygen and a feeding tube, just like he did before surgery. We'll be fine by the strength of God, but it is a little discouraging. Please pray that we are kept free from anxiety and that we can take one day at a time and put our trust only in the Lord! At least it looks like, for now, he won't be needing the trach and vent at home! We are VERY thankful for this and for all the progress he's made so far!

It was and is hard leaving the I.C.U. Though it's a step closer to home we really miss the friends/staff we became close to there! So far we aren't as impressed by the care he receives in moderate care. I guess we are just used to excellence from the staff in I.C.U. It's hard to beat that!

Michal is doing well. His mom says they hope to join us in moderate care in a couple of days. We hope to be roommates again! It would make the days go a lot faster that's for sure!

Thanks for your continued prayers! God has blessed us with you!

Love, Alicia

Monday, March 12, 2007

Gavin made his big move this afternoon! We are very excited and thankful! He is now in moderate care and seems to like it! He is in a room with two other patients. He's been moving around like mad and occasionally smiling! So, he must be feeling well.

I wasn't able to update yesterday because the computers were down, actually they are still down, but a kind lady I have met in the family resource center who always feels bad for me since we've been here so long is letting me use her personal computer! How thoughtful!

It was nice having Joel here this weekend! We both got to hold Gavin a couple times which is like heaven! It sure is nice having that vent out!

Well, I don't want to wear out my welcome on her computer. Hope you all have a great day! Thanks for your prayers! Oh, Michal continues to improve as well! Yea!!!

Love, Alicia

Saturday, March 10, 2007

Gavin is still off the vent!!! He is having good blood gases and good oxygen saturations. He has developed a fever and seems to be going through withdrawl from taking him down on sedation and pain medicine. Some signs he is showing is not sleeping and moving around a lot! He has hardly slept in the last 24 hours! It's kind of hard watching him at times because he looks tired, but not able to fall asleep. Most of the time he is just awake and happy though. He even was smiling yesterday evening! That was very good to see! The nurse has him sitting up in a red foam chair now. He looks so cute sitting up and kicking his feet and moving his hands all around! We are so thankful for this!!!

Joel and the boys and Grandma & Grandpa O. are here too! Everyone can't believe how good and different he looks! G&G and the boys are going back tonight. Joel will return tomorrow.

Little Michal continues to make small progress with his lung. So, hopefully surgery won't be necessary. God is Good!

We hope you have a great day! We appreciate your continued prayers! We think of you all often too!

Love, Alicia

Friday, March 9, 2007

Thank God from whom all blessings flow indeed!!! Gavin is still doing great! No major changes today, but still improving. They plan on keeping him in ICU through the weekend. They want to make sure he's doing well before heading to moderate care. Please keep praying that his lungs stay clear and free from infection! So far so good, but he holds on to fluid easily and it seems to go straight to his lungs, which could set him back again.

Michal has made progress today too! His lung that was collapsed has reinflated and they may not have to do surgery if the diaphragm isn't too far up into the lung. As long as his lung stays inflated he will be fine. I'm so happy to hear this! So is his mom! I told her I was still praying for him and that there were many friends of ours praying too. She is thankful for this! She and I were talking about what a relief it is that we don't have to remember every little detail in our prayers to God! Our brains become a little foggy here, but we know that God knows the details and fills in the blanks for us. She said what a blessing that we don't have to rely on our weak bodies and brains, because surely we'd fail! How true this is!

Thankyou for your prayers and support! Hope you have a wonderful weekend! It sounds like it will be a warmer one! Yea!!

Love, Alicia

Thursday, March 8, 2007

Gavin seems to be a big hit here lately with the nurses, doctors and respitory therapists. I just got here around one o'clock and they keep coming in with big smiles saying he looks real good! I think they are just as surprised as we are that he was able to get and stay off the vent! We know there's nothing our God can't do! We are so thankful for this gift! It took awhile, but we know it is all in God's timing and it just makes it even more special to us!

The staff here is so terrific! I called often when I was home, but a doctor and our favorite nurse still called to give us updates when Gavin had made additional progress! They have such big hearts and have really become like family to us! It will be hard to say goodbye.....well, not that hard! They said he may move down to the moderate care unit towards the end of the weekend! So, we are getting closer to home already!

Please continue to pray for Michal (this is how they spell it, I was wrong before). He still has a collapsed lung. They found out that his diaphragm isn't moving and is going up into one side of his lung making it unable to fill with air. He may have surgery tomorrow. I am so excited about Gavin's progress, but want him to be doing well too. I know how it feels when your child isn't doing well and other's are getting well. So, my happiness is diluted thinking about his family. She continues to have faith and is very happy for us. I hope that I can be a support to her as she was for me.

Thankyou for your prayers and the many acts of kindness you have shown to our family. I'm working on thankyous for many people (I hate to admit, slowly). I hope I don't forget anyone! If I do, Please know that your kindness has meant so much to us!!! We are very blessed!

Love, Alicia
Gavin seems to be a big hit here lately with the nurses, doctors and respitory therapists. I just got here around one o'clock and they keep coming in with big smiles saying he looks real good! I think they are just as surprised as we are that he was able to get and stay off the vent! We know there's nothing our God can't do! We are so thankful for this gift! It took awhile, but we know it is all in God's timing and it just makes it even more special to us!

The staff here is so terrific! I called often when I was home, but a doctor and our favorite nurse still called to give us updates when Gavin had made additional progress! They have such big hearts and have really become like family to us! It will be hard to say goodbye.....well, not that hard! They said he may move down to the moderate care unit towards the end of the weekend! So, we are getting closer to home already!

Please continue to pray for Michal (this is how they spell it, I was wrong before). He still has a collapsed lung. They found out that his diaphragm isn't moving and is going up into one side of his lung making it unable to fill with air. He may have surgery tomorrow. I am so excited about Gavin's progress, but want him to be doing well too. I know how it feels when your child isn't doing well and other's are getting well. So, my happiness is diluted thinking about his family. She continues to have faith and is very happy for us. I hope that I can be a support to her as she was for me.

Thankyou for your prayers and the many acts of kindness you have shown to our family. I'm working on thankyous for many people (I hate to admit, slowly). I hope I don't forget anyone! If I do, Please know that your kindness has meant so much to us!!! We are very blessed!

Love, Alicia

Wednesday, March 7, 2007

Praise the Lord!!! Gavin continues to improve! His nurse, Missy, called me about an hour ago and said that they were able to take him off the CPAP machine. This is what they put him on after coming off the ventilator. It's a high pressure oxygen that goes through the nose. It looks, to me, like a cross between a snorkel and a elephant's trunk. No, he didn't seem to care for it! Anyway, now he is just on regular oxygen through a nasal canula. This is wonderful! Please pray that his blood gases continue to be good and that he can handle the change!

He did begin running another fever last night and his lungs are a little guncky, but other than that he is doing great! They said he likes laying on his tummy and seems to be really comfortable. Laying on his stomach is good for him because his heart is enlarged which presses on his lungs making it harder to breathe.

So, good news for now! Thanks for the prayers! I'm probably heading back tomorrow morning instead of tonight. Joel came down with the stomach flu or food poisoning. We went out to eat for Jacob's birthday last night and he thinks it's from what he ate. So, I'm going to stick around for him and the boys.

Love, Alicia

Tuesday, March 6, 2007

Gavin is still off the ventilator this morning!!! We are so happy and thankful!! It was touch and go yesterday evening. He started to have poor blood gases and the doctor said if the next one isn't improved we will probably have to put the tube back in. Needless to say, it was an emotionally exhausting day! First there was rejoicing that the tube was finally out, then anxiousness wondering if he would be able to handle it, then sadness when we were told that they might have to put it back in. Finally, elation and thanksgiving when his blood gases started turning around and the doctor said he might have a shot at it. So, for now things are looking good! The Little Vinster is showing them that he has it in him! Of course, we know it's a gift from God!

Please keep praying that Gavin continues to do well off the vent and continue to pray for his roomate Michael! He is still off the vent too, but one of his lungs is collapsing. So, he needs lots of prayers today! His mom was so supportive to me yesterday! She cried more for Gavin than I did! She cried when he got off the vent and when they said they were thinking of putting him back on. When she heard that she came over to hug me and pray for Gavin with me. By then we were both crying! After we prayed together is when Gavin's gas came back looking better and we were told he might be O.K. Then she started crying again and had to leave the room. Then I was crying again! I was so touched by her and thankful for her support! Most importantly, I was praising God for this moment! I just kept saying to myself all day: Thankyou Lord! What a blessing!!!

Today is Jacob's birthday and I'm glad to be home for it! I can't believe he's eleven! Wow! I will be calling a lot to check on Gavin. They will probably be tired of me by the time I return!

Thankyou for your prayers and support! I hope you all are doing well too! Also, please pray for my sister's friend! Her husband passed away very unexpectantly on Sunday. It will be a very hard time for her and my sister! Thankyou!

Love, Alicia

Monday, March 5, 2007

It is extubation day in Gavin's room! He and his roomate both got off the ventilator this morning! Yea!!! Gavin is doing good, but not great. When they draw his blood gas it shows that he is oxygenated, but not blowing off enough CO2. Which means he's acidodic. This is all I can tell you, I don't understand all of it. Hopefully he will start to have better gases, they are drawing them every hour. Pray! Pray! Pray!

It is so weird to see Gavin's upper lip! It has been taped holding the vent tube in place for the last couple of months. When they took it off it looked like it does when a guy shaves his mustache after having it for awhile. I'm just not used to seeing it. He looks so cute, I got pictures! Everyone is still cautiously hopeful that he will stay off the vent. But, we'll just have to wait and see.

I am planning on leaving here late this evening. It will be hard leaving with things hanging in the balance, but I know he will be taken care of and that God has the plan in place! It is just so exciting to see things progressing this far!

Please pray for Gavin's roomate, Michael, too. He is in a similar boat as Gavin. His mom and I have gotten close this week. She is very kind and it's been nice having someone to talk to. Thanks for the prayers! I know God is answering them! He has sustained Gavin and us and will continue to do so. His grace is never ending!

Love, Alicia

Sunday, March 4, 2007

Gavin continues to do well today. He keeps sprinting and having good gases. This means that when they draw his blood after an hour of sprinting the results show that his body continues to be well oxygenated. His nurse last night even said that Gavin's gas was "textbook perfect" after the sprint! Yea! Go Gavin!! Like I said before this is great news, but don't get too excited. They hope to remove him from the ventilator tomorrow, but this doesn't mean he will do well afterwards. It's happened before that the patient does great with sprinting and they have to be reintubated soon after. So, he may still need the trach and vent at home. I can't help but be cautiously hopeful though! Keep up the prayers!

I am planning to come home tomorrow night. I really don't want to leave with all that's going on with Gavin, but it's Jacob's birthday on Tuesday and I want to be home for that! I will come back to Ann Arbor on Wednesday, so I won't be gone for too long.

Hope you are having a great Sunday! May God bless you all, as he's blessed us, especially with His gift of you in our lives!

Love, Alicia

Saturday, March 3, 2007

I was very surprised and excited this morning when I called to see how Gavin had done through the night! I was told that he had been sprinted a couple of times on the vent and that he had done well with this. Sprinting is when the vent no longer gives a breath, the patient has to breathe on his own, but oxygen is still running through the tube and pressure is given through the tube so that the lungs stay inflated. This is great news because Gavin has only gotten this far once and at that time he was only able to sprint one time. They usually sprint about three times and make sure the patient is doing well before taking them off the vent. They plan on doing this with Gavin longer because they want to make sure he's ready and they believe he has another infection (this time in one of his I.V. lines). So, maybe Monday if he continues to do well. I'm hopeful, but not to much. Just because he may get off the vent doesn't mean he'd be able to stay off and a trach is still a strong posibility. Keep praying that he can at least give it a try without a trach! Thankyou!

He is doing well otherwise. He is staying very calm and not needing extra sedation meds. He just looks around and is dozing off and on. They had to poke him a few times to draw blood and he didn't even seem to notice. It was kind of sad to see, because it probably means that he is so used to being hurt that it doesn't even phase him! Poor little guy!!! He's definately a trooper! The nurse said he must have a good disposition. He definately has been our most laid back baby so far, thankfully with all he's been through!

The weather here is windy and cold with flurries, but nothing like Grand Rapids has been hit with, so I've been told. So, once again, I have a reason to be thankful to be here I guess. I hope all of you are enjoying time inside or out! Joel and the boys had a work of digging out our driveway, but then they were having a snowball fight, so they are loving it I'm sure! Have a great weekend! Keep those prayers going! We are thankful!

Love, Alicia

Friday, March 2, 2007

Gavin is having a great day today so far. He appears to be very comfortable and peaceful. He has been awake quite a bit, looking around and looking like he's trying to talk. Of course, you can't hear anything because the vent tube down his throat prevents noise from coming out. But, I'm sure he's telling us a lot! They have been able to make a few changes on the ventilator for the positive. He also had Physical therapy and Occupational therapy come in to work with him today. There is very little they can do at this time due to the vent being in, but they do some stretching and playing with him. So, we are having some fun!

Thankyou for all your positive and inspirational messages! I especially thought about the one how God makes children just how he planned and that they are perfect in His design! To us it may seem, in many areas, that Gavin has many imperfections; heart defects, lung issues, Down Syndrome...but God made him and all of us, so we know that these imperfections are just how God wanted Gavin and us to be. His Knowledge and plan for Gavin and us can only be perfect! So, the message lightened my heart and made me see clearly just how wonderful and perfect God's gift of Gavin is to us!

Hope you have a great day and weekend!

Love, Alicia

Thursday, March 1, 2007

Gavin's surgery got finished around 2:30. They say it went well. I haven't been in to see him yet because they have to get him settled in first, plus it's unit shutdown time for nurse report. He always looks so lifeless and fragile after surgery, so it will be sad. But, as his nurse(Missy) said before he went down; he'll be out of it in a half hour or so knowing Gavin! They can't keep him down for long!

Anyway, I just wanted to let you know, so far, things are looking good! Thanks for your prayers!

Love, Alicia

P.S. Some of you have replies to your messages that you have posted recently. I took time (since I had some while waiting for Gavin to be done) to reply to your messages. Look for the reply under the message that you typed to us.
Gavin just went back for surgery. This means that he will have had a surgery in Jan., Feb., and Mar. I told him and the nurse that April was out of the question! I am booked for the month! I'm hoping God has the same plan! This surgery should last one to two hours. I'll try to update later to fill you in on how it went.

Since I have some time now I'll share something that I read in a book given to us from our pastor. It talks about how there are areas of the Word of God that can't be fully understood until we have experienced suffering. It also talks about reading the book of Job in the Bible when going through trials. I am going to begin reading here this week. There is a poem that really got my attention.

I walked a mile with pleasure,
She chatted all the way,
But left me none the wiser
For all she had to say.

I walked a mile with sorrow
And ne'er a word said she
But oh the things I learned from her,
When sorrow walked with me.

This is so true! I have learned so much in these trials than in any other time in my life. I've learned about the true love of God and His grace! I've been more apt to read His word and understand it! I've learned more about myself, my family, my friends and human kindness! Oh how kind people can be!!! What a blessing! So, though not fun to go through, be thankful for trials and take the opportunity to learn from them! Life is a battle, but with God we will win the war! And, be better off for having to fight.

I pray that all of you will have a peaceful week, but that you are able to learn when trials do come! I know I have! I am so thankful for all of you! God has blessed you and others in turn with your love and kindness! Thankyou for showing it to our family!

Love, Alicia