Gavin is still in the hospital. He is slowly getting better. He is now on 1 1/2 liters of oxygen and doing well on this amount so far. The x-ray of his lungs today showed a slight improvement, but still cloudy. The doctor today said that they are going to try to get him off the O2, but may need to send him home on some. He said that hopefully he will be discharged by the end of this weekend. This is the first time someone gave us an idea of how long Gavin would be here, so I think this may be a good sign!

Tomorrow is the Down syndrome Association Buddy walk. We are still planning on walking even though our buddy can't come along. :( We are very thankful to the very generous friends and family that donated to the cause!!! We are so blessed to have such wonderful support! We have now surpassed our goal! The Association will greatly benefit from your generosity!

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

Love, Alicia and Family

Gavin is still in hospital! He is taking his time recovering. He's been up and down, depending on the day. He is off the CPAP for now, but only because he hated it SO much and I made them take it off. He was in too much distress with it on. I figured he'd do better if he was kept calm. Now he is on regular oxygen at 3 liters, which is a lot for a little guy! He was at 4 liters, so hopefully he'll continue to get down on the amount and off of it entirely soon!

I've been quite grumpy these last few days, having to watch him go through this again! Mama Bear has had to emerge a few times to make sure that they are remembering that Gavin IS a baby and not just another case! They don't think about how it must FEEL for him to go through this! So, I have had to assert myself a couple of times to make sure Gavin is being treated well. It doesn't feel good to do this, but I have to look out for the Vinster too!

Please continue to pray that Gavin improves quickly and that he can come home soon!

Love, Alicia and Family

Just a quick update to let you know that Gavin is still in the hospital. He is now on CPAP, which is a type of assisted breathing machine. He does not like this one bit, but it's necessary for now. We have no idea how long he'll be in the hospital. Pray for a quick recovery! Thanks!

Love, Alicia and Family

Things have changed since I last posted. Gavin is back in the hospital. His cough and breathing got worse during the night. They think he has pneumonia. Please pray for the little guy today! Pray that he gets well fast and that he can come home soon! Thanks!

Alicia and Family

Gavin's had a busy week! He's seen 3 doctors and had his blood drawn. I had him wear his shirt that says "1,2,3 strikes you're out!" We wanted to make sure they knew that was as many shots they had to try to get some blood out of him! Unfortunately it took that many tries. Our regular guy, Dave, wasn't there. He usually gets it on the first try. Next time I might call ahead to make sure he's working. I hate watching Gavin go through it every time, but he's a trooper.

At the neurologist office they decided to put him on another anti-seizure med. This means that he's now on a total of 3! The hope is that this new one will stop them and then they can get him off the phenobarb, which slows Gavin down. The doctor also ordered another EEG and a CT scan of his brain. He wants to make sure that the "injury" to his brain didn't cause a stroke as well.

Next we went to the cardiologist who said that Gavin was doing quite well. He was pleased with the sound of Gavin's heart and what the echo showed! I was so worried he was going to tell us that Gavin needed to be back on oxygen, but he thinks he's doing suprisingly well! A great answer to prayer!!!

Lastly, we went to our family doctor. He found that Gavin has an ear infection. So, now he's on an antibiotic for that. (Gavin is keeping the pharmacy down the road in business!) Gavin has also had a cough. I was really worried about this. Jacob was too. He asked if it would send Gavin to the hospital. I was thinking the same thought, but hopefully not! It may just be from the ear infection. Let's hope and pray! So, mostly good news on Gavin, I think.

Caleb has been quite the talker lately! He always has something to say and if I do say so myself, he has some great thoughts on things! I'll share a couple with you now. He asked me the other day "Why do cars go faster than the speed limit?" I told him because people want to go faster and he said "People get hurt and arrested when they do, so why don't they make cars only be able to go as fast as the speed limit?" I thought about it for a minute and agreed with him! No one NEEDS to go faster than 80 miles an hour! Why don't they just build cars with that ability?!
My vote in 2008 is for Caleb for President!!! We probably could use a kid in office! There might be a lot more honesty! You know how honest 4 year olds can be! Plus they are so much more innocent. Anyway...Another question came after a bloody fight with brother Nolan. It wasn't pretty! I was upset and told them that it made me very sad to see them fight. He thought about it and then later asked me "Did Cain love God?" I guess he was feeling guilty about his actions towards Nolan and wanted to make sure that even though he didn't like his brother at the time, that he still loved God. I told him that you could still love God when you are angry with someone else, but that it made God feel sad when we aren't nice to each other, so we needed to try hard to be nice. He was content with that answer.

Thanks for all the Birthday wishes sent Gavin's way! He tried frosting from his cake and actually liked it a little! Figures! He cries and cries when we feed him anything healthy,by mouth, but he'll accept the sweet stuff!

Thanks for your continued prayers and support!

Love, Alicia and Family

Happy 1st Birthday Gavin!

It's Gavin's birthday today! Happy Birthday Gavin! We are so proud of you! You have had such a tough first year, but you have fought so hard and been such a trooper! God has blessed us with you! Our prayer for you this day is that you may feel loved and happy! We pray that you continue to get better and someday look back on this year with appreciation for all you've been able to accomplish in life! We love you little buddy!

I came to the realization a couple of days ago, after talking with the NP at Gavin's neurologist office, that I've been kidding myself. I've held such hope for Gavin's future! I still hold onto hope, but it's not so high anymore. I was told that the EEG showed that he was having less seizures, but that there was still significant swelling on his brain. I was also told that the seizures and delay in Gavin all stem from the "injury" to Gavin's brain back in April when he became severely dehydrated. I was also told this would be a life-long struggle, with at least a couple of seizure meds needed to be taken. This is the good outcome. If they can't control Gavin's seizures with an anti-seizure med, the next step might be to give him steroid injections. We could handle this, except that the price of this treatment is VERY high! Some of you may have read a story in the G.R. press about a month ago about a child that has been using this treatment. At one time the cost of this was around $2500 a month. Now it costs $25,000 a month! Ridiculous!!! This might not even be needed for Gavin, but just the thought of it scares me!

I have been crying a lot over the last couple of days. Coming to this realization and just coming to terms with the last year has made me very emotional! When I think back to all that Gavin has been through! It breaks my heart! I've also been feeling guilty that I let the hospital do some of this to Gavin! I feel I should have been more authoritative with them and not allowed them to give Gavin such high doses of such a powerful dieuretic! I told them that I thought it was too much and I told them that I thought he was dehydrated, but I should have yelled and stomped my feet until they listened to me! Instead I trusted them and their knowledge. I know that I can't beat myself up for this, but it's hard not to. I also know that there is a reason for everything and that God has a plan for Gavin. Sweet, precious Gavin! I called to talk to someone at the patient relations department again concerning what happened back in April. I told them that I needed concrete evidence that something was done and that this won't happen again to someone else! I even offered to talk with incoming residents, though I'm deathly afraid of speaking in public, about listening to patients and their family members. I feel listening, communicating and really knowing your patient would prevent things like this from happening. Who knows what will come of this, but I know that I need to be proactive about this to get over this guilty feeling and to make some sense of why it happened.

Another thing I've been thinking about is how much responsibility I have with Gavin. I know that God holds Gavin in His mighty hands, but essentially I hold Gavin's life in mine too! I have to read Gavin daily and know when to call about something and I need to keep after the doctors to make sure they are aware of things. He has so many meds and doctors! It's hard to make sure all of them are working together. Please pray for me that I can keep a clear mind and not worry about this responsibility. Please pray for our other children too. I want them to feel like they are well taken care of and loved too! Please continue to pray that Gavin's seizures will be under control and that the swelling in his brain goes down.

Thanks for your continued prayers and support! Thanks also to those of you who have generously donated to the Down syndrome association! Their assistance to families is greatly needed!

Also, I wanted to let you know that the car seat problem has been cleared up for now. When Gavin grows bigger I may need more ideas, but I REALLY appreciate everyone's help!

Have great weekend! We plan on it.....Someone we know is turning one year old!

Love, Alicia and Family

In reference to the Buddy walk on September 29, my mom is ordering T-Shirts that say "Gavin's Gang" for all of us to wear. If anyone is interested in ordering one let me know. They cost $3.00. If you are interested e-mail me at javanderwall@yahoo.com and let me know what size you want. Please let me know by this week Thursday or Friday. Thanks!

Thanks so much to those of you who gave me some ideas yesterday! I really appreciate them!!!

Thanks for your continued prayers! Have a great day!

Love, Alicia and Family

Well, we all survived the boy's first week back in school! Jacob said it was "OK." Nolan said "It was the best days ever!" He also claims to have found a new "best friend!" Caleb was depressed for a couple of days. He wanted to know when we would be picking up "my brothers" just about every hour they were gone! He's doing better with it now though. I was sad not having them around the first day, but soon adjusted when I realized I wasn't hearing any yelling going on!

Gavin is STILL having seizures! Although, they seem to be less noticeable when he has them. So, I'll be calling the neurologist today. They'll probably just want to up his meds again! I'm all for it if it works, but after months of this.....it seems like we should try something else! Hopefully they will have results of his EEG when I call. Some promising news with Gavin is that he has been a little more alert and responsive with us this week, especially in the evenings. He has been trying to "talk" with us more, having more eye contact with us and has been more active. I am so thankful for this! He still doesn't smile for us, although he gives us looks of contentment and my mom says she thought he smiled for her Friday when she was watching the boys for us. I REALLY could use some smiles from him! Please pray for this for him and me! It makes me so sad thinking that he isn't happy or enjoying life!

I have another request for you. Gavin has outgrown his infant car seat. Not a big deal, except that I'm not sure how I'll be able to take him into the grocery store if I need to. He doesn't sit up on his own to be able to sit in the cart and carrying in a huge toddler car seat would be a pain! So, I'm asking for any ideas that some of you might have. He weighs a ton, so carrying him around is out of the question! He seems even heavier since he's so limp and doesn't "help" by holding up some of his weight like most babies his age do. Any thoughts on this matter would be appreciated!

We are excited about an upcoming walk that is being held to raise awareness and money for Down syndrome! It is being held September 29, 10AM, at Millennium Park. If you are interested in joining us let us know! Gavin's Aunt Jill (Joel's sister) is setting up a team for us! If you want more details you can e-mail her at mandjsteenstra@yahoo.com. If you would like to make a donation you can go to http://www.firstgiving.com/gavinsvoice. Thanks for your support!

Have a great day! God's blessings to you all!

Love, Alicia and Family