Gavin had a great day yesterday! He was finally able to go through the day without oxygen on. His O2 Sats stayed high enough to keep him off all day, but we put it back on through the night. We don't want to rush him. I'm thinking that after he had pneumonia we took him off the O2 too fast. His Sats were good, but maybe he just needed more time, which could have been the reason he became sick easier this time around. I don't know about this for sure, but it's worth a try! He was also more like himself yesterday. He was awake a lot more and seemed happy and more alert. Jacob kept saying how happy Gavin looked. So, it was a great day!

I also watched a show about a guy with Down syndrome. It was very heart warming! One of the things it said was that those like Gavin weren't put on earth to learn. They were put on earth to teach! How true this is! This made me cry and feel a whole lot better about the news we received recently! Gavin may never talk or walk, but I bet he will teach us more than any of our other children do! I know that he's taught us more in his short life than I ever could have hoped to know! He has a purpose! This I know for sure! I also came to a realization that maybe our family are the lucky ones! We will have it harder with all the care that we will have to give to Gavin and we may not be like the 'norm', but who says that we aren't actually more blessed by this situation? Somedays I feel overwhelmed and start taking pity on myself. I also see pity on other's faces towards us. I told my friend that I don't want pity! This weekend I started thinking that someday we may actually have pity on those who didn't get the chance to have someone like Gavin in their lives! We may say, "We're so sorry you don't have this light in your lives! We feel so sorry for you." Just because we aren't like most families doesn't mean we are the ones who weren't blessed with a easy and 'good' life! I'm starting to see a different side of this! Now I feel like we have been more blessed by Gavin and this opportunity to learn and really feel God's love a blessings than many others! Anyway, Not to brag or anything! :) I just wanted to share my turn around with you.

Also, I hate to even mention this because it seems many times I do mention something good it only gets worse, but Gavin hasn't had a seizure that we can see for a couple of days! This may not seem like a big deal, but he had been havin 2-3 a day that we could see visually! I am so uplifted by this! Thankyou Lord!!! Hopefully we are on our way to seizure free days! Please continue to pray for this!

One more thing I'd like to mention is something Caleb said to me recently. I'm a little concerned about this one! He told me that "God is going to put two babies inside you mom! A boy and a girl. We are going to name them Jr. and Sally." Now, I know that children say this stuff, but the reason I'm worried is because the day after I found out I was pregnant with Gavin, Caleb said to me, "Mom there is a baby in your belly right now." I hadn't even told Joel yet because I was going to surprise him, so there is no way he heard this somewhere! So how did he know this?! Anyway, just thought I'd share this with you and ask that you pray this does not come true!!! I really would love to have more children, believe it or not! But, I really don't want to be pregnant again and especially not with twins!!!

Have a great day! Thanks for your continued prayers and support! We really appreciated all of your comments, cards and thoughtfulness after my last update! They really helped us get through some tough days! God has blessed us with you!

Love, Alicia and Family

Gavin came home Saturday evening. They never did find out what was wrong with him. He must have just caught a virus and, as usual, his body just can't handle what yours and mine can. He is still on oxygen. Hopefully we can wean him off from it again soon!

While in the hospital his neurologist was on call, so he came to see him there. This was a relief since the next available appointment was in December! We did not receive good news from him. The stroke that Gavin had back in April was throughout his entire brain it looks like! The damage is not reversible either! The stroke he had is not like the ones adults have. When an adult has one it basically kills off part of the brain and hopefully the person is able to use the rest of the brain to recover. The type Gavin had is all over, but it did not "kill off" the whole brain. The neurologist says the CAT scan looks a lot worse than Gavin does visually. I don't know if this is a good thing or not. It could mean that Gavin is a tough little guy(we knew this already though!)and he's fighting through to make some contact with us and could progress further down the road OR it could mean that there is little hope for him progressing mentally or physically. The neurologist just doesn't know, but he didn't seem very hopeful. He also said that we may never be able to fully stop the seizures. He did increase one of the meds that he is on for them though. I have tried to always hope for the best, but it's not looking like a bright future for Gavin. We all really just need to accept that Gavin may never progress any further than he already has. I'm REALLY depressed about this! I don't want to accept this, but it's looking to be this way. I would really appreciate it if people would be considerate of my feelings right now and down the road. I really can't answer your questions anymore about how Gavin is doing, if he's progressing, if physical therapy is helping, if Gavin is eating by mouth. It wears me out emotionally having to go through these conversations all the time, especially knowing now that he may never get further. I understand that you ask to be supportive, but I'm just tired. This doesn't mean that we don't want to talk about Gavin and it doesn't mean that we've given up the fight. It just means that I need some space right now and that I don't want to have to always be consumed with what is going on, because quite frankly, this is how I feel---totally consumed! Please pray that I/we can not feel this way and that we are given the strength needed to care for Gavin and our other boys. Thankyou for your love and support!

I am so thankful for our other boys right now! They exhaust me sometimes, but they are such a distraction and amusement to us! I am so proud of them and thankful for them! I have been so worried that they aren't getting all that they need with all that we have to do with Gavin. I've also been worried that they will be negatively impacted by all of this. This hospitalization turned out to be a blessing for me because one of Gavin's nurses grew up with a severely special needs sister. He was very helpful to us by sharing his feelings about growing up with a sibling who required alot like Gavin does. I asked him how it has affected his life. He just smiled and thought about it a minute, then he said that "the benefits far outweigh the negatives!" He said that he wouldn't change his past and that he is a lot more compassionate and has learned so much from the experience! I could definately tell this about him! He was one of the most helpful nurses that we have had for Gavin and he had such a kindness about him! So, though this hospitalization was quite an inconvenience, it helped me tremendously in this aspect!

Please keep those prayers going for Gavin and our family! Also, please don't be afraid to talk to me about Gavin just because I don't want to answer a lot of questions. I still need your support and friendship, as it is quite a lonely feeling living like we've had to the last year. I really appreciate all of you!

Love, Alicia and Family

UGH!!! Gavin became sick again last night. He came down with a fever and wasn't breathing as well again. We took him to the doctor this morning and for an X-ray. His lungs are "hazy" again, so he's being admitted to the hospital this afternoon. I'm at home with him waiting for the hospital to call with his room number. He's not doing as poorly as he was last time, so hopefully it will be for a very short visit! Pray for this! Pray that our family handles this inconvenience well too! As you know from my last update, I'm on the verge of losing it already!

Thanks for your continued prayers and support!

Love, Alicia and Family

I have been very weary today. I am so sad continually watching Gavin suffer! In my last update I told you that Gavin wasn't gagging as much, but the last couple of days it's as bad as ever! He still continues to have seizures as well! He is on 3 medications to stop them, but it's obviously not working! Tomorrow he has a neurologist appointment. I pray they have a new plan that will work this time! It really gets to me some days! Today is one of those days! On days like this I have a difficult time understanding God's purpose for Gavin and our family. As a christian I know that God has a purpose in all of this, but as a human being, with emotions, it's hard to accept it. Why Gavin? Why us? Some people seem to have the 'perfect' life, while Gavin has to go through sooo much and I have to watch him go through it all! It feels like I'm sufficating some days! I just want to walk away from it all because I don't want to witness his suffering anymore! I guess this is similar to how God felt watching Jesus suffer for our sins. There was a purpose for Christ's suffering and I know that there is a purpose for our suffering as well. Today I was praying to God that Jesus would return soon, so that this suffering would end. The amazing thing is that right after praying this I opened up a book that we were given by a friend from church. Guess what I read?! "Then I saw a new heaven and a new earth...There will be no more death or mourning or crying or pain...He who was seated on the throne said, "I am making everything new!" Revelation 21:1, 4-5" Boy did I need to hear this today!!! This made me cry harder, but I was crying with thankfulness! I find myself sinking so often, but God always gives me what I stand in need of for the moment! Sometimes I read something. Sometimes someone calls with a kind word. Sometimes we receive something in the mail that brightens our day. I'm so thankful for this much needed comfort! I believe that God uses each of us and sometimes even a book to do his work. Thankyou for letting God use so many of you to help our family get through our difficult days! I am thankful for God and I'm thankful for you!

Love, Alicia and Family

I forgot to mention some more good news. Gavin is off the oxygen again! We have a pulse oximeter at home and can check his oxygen saturation and it's been good. He really hated having it on his face! He constantly pulled it off, tape and all a couple of times! So, I'm glad that he doesn't need it any longer! I wasn't getting much sleep checking on him to make sure he hadn't pulled it off! He saw the doctor this week and he said his lungs sound great and his ear infection is gone. He also needed 5 shots which he was NOT happy about! Poor little guy! He will need to get 2-3 shots once a month, for the next 6 months. He's getting something called Synagis that helps to prevent RSV, a respiratory illness that premature babies and ill children are more receptive to getting. I hate that he's always having to go through something! My mom says it's all he knows though. His entire life he's had to deal with this. It doesn't make me feel any better knowing this, but it's true unfortunately.

I want to respond to a comment we got about my last posting. I appreciate your thoughts on the subject and realize that I could have been nicer, but so could have he! You shouldn't start a conversation with, "What's WRONG with him?" If he really cared he would have said something like, "Poor little guy, he reminds me of my nephew who has heart problems." Not the way he did it! It isn't a stranger's business what is 'wrong' with my child for one thing and for two, he could have been more empathetic if he had to know! I will try to come up with a more appropriate response next time, but if you had to deal with this as often as I do, you would probably get tired of it too and not always respond in a kind way! Plus, I really feel that he should know that his question was rude! Anyway, I needed to get that off my chest!

Have a great weekend!

Love Alicia and Family

I can't shake a distraught feeling that I have had since an encounter with a young man at the grocery store this morning. He came up to me and said, "What's wrong with him?", refering to Gavin. I didn't know how to respond. I was upset that he had the nerve to ask such a question! So I said, "That's kind of rude to ask, don't you think?!" He claims that he asked me because he has a nephew with heart problems. I then told him that Gavin does have heart problems and that's all I said. I felt very sad after this. I'm used to people looking at him and giving me looks of pity when they see he has a tube hooked up to him (feeding and oxygen at times), but they usually don't have the nerve to ask something like this. I guess I'll have to become more tough skinned, but I don't want to have to! I really appreciate it when people look at Gavin and smile and say , "Cute Baby!", or something like that. I really DON'T like it when people say that he doesn't look as "Down syndrome" as some do! He looks like Gavin! The way God intended for him to look! Also, he HAS Down syndrome, he ISN'T Down syndrome! He's a person with needs and feelings just like all of us! Why do some people think that they have the right to know what's "wrong with him" and talk about him to me this way?! Joel said that I should have said something like: "All of us have something wrong with us since sin entered the world." "Share what's wrong with you and I'll be happy to share what's 'wrong' with him" or "It's obvious what's wrong with you, at least you have to ask to find out what's 'wrong' with him." I just feel so sad that Gavin will always have to face these encounters! I really feel mama bear coming out at times like this! I guess I'll have to pray about it. The moral of this story is: People have feelings and if you can't say something nice, don't say anything at all! That's what my mom always told me! Thanks for teaching me manners mom! Thanks, all of you, for listening to me vent!

We received some more bad news from the neurologist. The CAT scan that Gavin had shows that he had a stroke back in April when he was so dehydrated. The stroke didn't show up on the first CAT scan that Gavin had because it takes about a month for it to show up on a scan. If Gavin could have had an MRI, it would have shown up right away. Like I've said before, Gavin can't have an MRI because he has a pacemaker. The neurologist says he hasn't seen the report with his own eyes, so we don't know what part of the brain was affected. This may be why Gavin continues to have seizures. I feel like it's never going to end! I'm tired of being patient! I want answers! I want no more seizures! Please pray for this!

Enough bad news! Now for some good news! Gavin isn't gagging as much as he used to since changing from the higher calorie formula to the regular kind! I'm really happy about this! He also seems to be focusing a little better on things and us with his eyes! I'm thankful for the little things!

Thanks for your continued prayers!

Love, Alicia and Family

I just wanted to give you all a visual of how chunky Gavin has gotten. I set out clothes for Caleb and Gavin this morning and told Caleb to go get dressed. I came in to check on him and found him wearing Gavin's jeans! Yes, he fit into to them! They looked like tight shorts on him, but he was able to button them and all! So, now you know how well Gavin has grown! Caleb is a skinny minny, but still! I had the best laugh! Just what I needed to start the day off right!

By the way, Caleb started preschool today! He was so excited! I felt a little sad as I left him. He is growing up way too fast! I know he'll love it though!

Have a great day!

Love Alicia and Family

Gavin is home from the hospital! He came home yesterday afternoon. He is doing so much better! He was sent home on a small amount of oxygen which we are to wean as he tolerates. We are so thankful that he is feeling better and that we can all be home again together! It sure does make life a lot easier! He seems very happy to be home too. He's been 'talking' lots to us and seems to be very content.

We had a great time at the Buddy walk on Saturday! We were all sad that Gavin wasn't there with us, but it was fun seeing all the adorable kids walking! It gave me great hope seeing so many with Down syndrome doing so well! It also made me sad thinking that Gavin may not advance as far as they seem to have come. It was very uplifting to be there though! Everything went great, besides my freaking out for a couple of minutes when I couldn't find Nolan and Caleb! I'm so thankful to all of you who came to support us, Gavin and the association! Thanks also to those of you who donated! A BIG thankyou to Jill who put so much effort into making the day and fundraising such a success!!!

We are very blessed to have so much support and love in our lives! Thankyou!

On a side note: Does anyone know of a baby who is on Similac Neosure formula? Gavin has been on this, but was switched while hospitalized. He's kinda on a diet! He impressed the doctors so much with his weight gain that they decided he didn't need to be on this kind anymore. We have 12-15 cans that I'd hate to have go to waste! Let me know. Thanks!

Have a great week!

Love, Alicia and Family