Howard Family Blog

New Blog Page

2011-05-17T06:27:00.000-07:00

Good morning everyone. I have created a new blog page. This page will contain updates on both of the howard boys now not just Garet. hope to see you there.

http://thehowardboys.blogspot.com/

2010-11-03T11:08:00.000-07:00

Sorry this is sidways but I can not figur our how to turn it right now and i wanted everyone to be able to see Garet on trick or treat night.

Its a SHAAARRRRKKK!!

2010-10-22T10:43:00.000-07:00

This is a new toy at grandmas house. I don't really think that Garet realises that it moves as of yet. He is more interested in sitting inside and honking the horn and then filling the back up with rocks. It is a good thing he is not trying to make it move

or grandma might have to run around more than she already does. It is Halloween time and Garet is a SHARRRKKKK!!!. We went up to the church pumpkin patch the other night for there trunk or treat and at first Garet did not know what to think. When we started walking around doing our trick or treating he did not want any of the candy to go in his bag he had to carry it all. Then someone gave him a sucker and then the rest of the candy did not matter. He had two suckers and a couple minutes after that he was running around everywhere in his costume making all kinds of noises. He would say SHAARRKK SHAAAAARRKK. I am not sure if he knew that is what he was dresses up as or if he just wanted to say it. Either way it was really cute. I am so looking forward to next Sunday when we get to do some more trick or treating around Grannies house.

Garet is 1 1/2 and baby Howard is 22 weeks.

2010-10-07T05:41:00.000-07:00

Here we are, wow how time flies. Garet is now a year and a half. He is using his words well. Each day it surprises us what he says. It used to be we could only understand the last work of his sentence and now he is string 2 and 3 words together. Sometime I feel like I am talking to a parrot and he is just repeating what I am saying. He now things jumping on the couch is a game called "Sit down". That does not mean he sits down when I tell him to it just means that as he is jumping he says sit down, sit down. It is so hard to not giggle when he does those things. It is very cute but can very quickly turn into not cute. Matt has told me that I have to start being more strict with him. He always says that if Garet is anything like him when we was little he will be a very tricky little boy. I can already see his little wheels turning when we ask him to do something. It is like he is thinking of the fastest or easiest way to get it done or get out of it. It is so much fun to be able to talk to him and have him understand and respond.

The picture above is Garet and his Song. He loves anything that makes music. He has started a collection of maracas, drums sticks, and drum toys. This by far is his favorite musical instrument. He found it at a yard sale and loves to walk around the house with it singing his own song. We actually have to hide it when he looses interest or he will not put it away when it come bed time.

Now that the weather is cooling off it is so much fun to be outside. As soon as we get home from work and Grandmas we normally hang out outside while Matt cooks dinner on the grill. We have found that we have to find more outside toys to play with. Good thing Christmas is coming soon.

The above picture is of Garet and his new Bike. We found this at a Garage sale last week and he loves it. He still need to grow about 2 more inches to be able to peddle on his own. He can peddle a little bit till the peddles get out of reach. It does have a bell on it and it is so easy to ring so most of the time right now he sits on it and rings the bell till Matt or I come and push him around.

Garet dr update - The last visit to Shands went well. Dr Fricker only change one medication and that is just because of normal weight gain. He is now up to 23 lbs. That still puts him in the lower range of weight but he is still on the chart and that is good. He has also grown up quite a bit he is now up to 33 inches. His heart function is still around 35% so we are still just watching and waiting. We have been trying to get Garet ready for the new baby as well we can. He now has a big boy room with a big boy bed that he has slept in a couple times during nap time. We are getting ready to do the overnight transition. I just want to get a couple more naps in on his big bed so I can make sure I have everything blocked so he does not fall out of bed. That will help me sleep at night when we move him to that bed. So many thing going on and so little time to get used to it before things start to change again.

Below are the latest pictures of Baby Howard. These were taken yesterday at my high risk appointment. He were able to see the Little one for at least 30 minutes while they did a fetal ECO. It is so amazing what technology lets the drs do these days. They were able to zoom in to the heart and measure the blood pump in and out and how thick the walls of the heart are. The dr was very happy with what he saw. The heart structure looked perfect right now and the blood flow was good. I will have to go in every 4 weeks for a fetal ECO to make sure everything is still good. They have told us many option if something does start to look funny, but we will not worry about those right now. We are just happy that the baby is looking good and right on track in growth. After all the measuring and everything the computer told us the baby weights exactly 1 lb right now so that was cool to find out. We are trying not to find out the gender again this time. With ultra sounds that are this long it has to be hard to the tech to avoid that area. I secretly try to see if I can see anything but the tech we had yesterday was awesome in getting lots of pictures without getting that area in the pictures. Anyway here are the pictures enough of my talking. If you have any guesses on what gender that baby could be I would love to hear them. Have fun looking.

Some pictures for your viewing

2010-08-26T05:31:00.000-07:00

Watching TV.
Grandma has a comfy couch to take naps on.

Garte Thinks it is fun to play in the dog cage. Thank goodness grandma had just changed out the dogs blankets.

Having fun swinging in at the park.

The weather the past couple days has started to cool off just a little bit. Instead of it being in the high 90's all day long, This morning it was 75. It is still suppose to get really hot this afternoon but at least we are getting a little relief in the morning.

We are still working on getting more calories into Garet. His pediatrician wants him to gain more weight then he is right now. He eats all the time and just burns it off as fast as he eats it.

Other than that everything is going ok in our world. We can not wait till it gets to camping time and the weather cools down for a while so we can get outside a little more and not have to take a shower as soon as we get in the house. Hope everyone is doing well.

Almost 16 months

2010-07-26T12:01:00.000-07:00

We have had a crazy past couple of weeks. We have had some vehicle issues that we are working on getting under control. Then on the 17th we got the very unexpected news that Matts step dad at that age of 50 had suddenly passed away from a major heart attach. His step Dad has been heavily involved with raising Matt, his Brother and sister. He has been active in there family for about 20 or so year. Death is hard no matter when it happens, but to have someone take at a younger age with no warning is so scary. The services were this past Friday and they were very nice and I am sure we will never forget him and all he has helped our family with over the years. Please let this be a lesson to anyone that thinks they do not need to go in for regular check ups. The Medical examiner said that he would have gone into the Dr for any reason, even just a wellness check up, they might have been able to catch this ahead of time and he might still be with us. You need to treat your heart good and thing about what you are doing and how it might effect your life.

Onto the next subject. Garets Heart. Last Wed the 21st we went over to Gainesville for out monthly meeting with Dr Fricker and his group great people. The past couple of months we have had to go once a month. Since Garet has started to walk and run and be a crazy 1 year old, his heart function has gone down a little bit. Because this was happening they wanted to monitor him a little closer. Well it looks like things are starting to even themselves out a little again. They did there normal ECO and EKG. (These went a lot smoother this time since we brought one of Garets favorite moves with for his to watch) When Dr Fricker came in to see us Garet was running around and trying to tell him what was going on. It was to funny. Dr Fricker said that everything looks about the same as last times we had been over there. This was good news. It had not got worse. We can deal with that. He is still at about 30% function (70% is normal function) Before Garet started to walk he was almost up to 40%. We are hoping to climb back up there but will be ok with 30 right now. They did not adjust his meds or anything since he has not gained a lot of weight since the last visit. He is now up to 22 lbs and 30 inches tall. This was the first time that they used the big person scale and height checker with him. He thought it was so cool to get to stand up and get weighted and measures. We are now back to only having to go every other month. Yeah!

Onto baby #2. I have now almost reached the 12 week milestone in this pregnancy. I am hoping that the sicky feeling with start to leave me soon. I had this same feeling with Garet up till about now. At my last dr appointment they did another ultra sound since it was to early to hear the heart beat from the outside. It was very cool to see the little one. We did not get to see Garet when we was that small. My dr said that everything looked good. We were able to see the heart beating and the baby moving all over. They have me going in every month right now and then starting in September I will be going to a high risk dr as well. This way they will able to make sure everything with the babies heart looks good. It is amazing what they can do before the baby is even born. They said they will be able to do a ECO on the babies heart in September to make sure the function looks good. As long as everything continues to look normal I will be able to stay with my normal Dr and deliver at the same hospital as I did with Garet. It they see anything weird then I will have to be transferred to the high risk dr full time and then I would have to deliver at a different hospital. I really like my normal dr, he did a great job with Garet and he made me feel so comfortable about the hospital experience.

So for me I will be back to the dr next month and Garet will be back to Gainesville in September.

Sorry no pictures I have been majorly slacking in this area.

Vacation was a lot of fun

2010-06-22T10:07:00.000-07:00

I was really bad at taking pictures on vacation. I am hoping that some of my family members that took pictures will email them to me so I can post more pictures for you all to see. One of Garets favorite things to do on vacation was take a bath. The bath tubs in the condos were very large and like a pool to him. He wanted to take them even if he was not messy. Lucky for him we did a lot of stuff outside so most evening he needed a bath.

We were able to go to the beach a couple times. At first Garet was not to sure of the sand and water but it only took a little while for him to warm up to it all. Below is a picture of Garet and Grandma Rose looking for shells.

We had lots of fun looking for shark teeth. Matt is one of the best for finding them. We were out in the ocean floating around and a guy near us found one down in the sand that was as big as my hand. I am just glad that he found the tooth and not the shark it belonged to. It was huge.

Beach time does wear you out. So what better place to take a nap than under the umbrella with the sound of the ocean all around. I wish I could just fall asleep anywhere and get some good rest this way.

The final picture I wanted to post is not from our vacation. Matt, Garet and I have some big news. We are going to be welcoming a new member to our family in late January early February. We are now expecting Baby Howard #2. Below is the first glimpse that we were able to get of baby Howard. We are very excited and nervous all at once. I saw the dr the other day and he said that they were going to do everything they can to get us to the correct doctors to make sure everything looks right with Baby #2 heart. We feel very blessed and thankful that we will have this addition to our family. We are now and have been praying for the health of the baby and all the doctors that will be with us on this venture to the next chapter of our lives.

Its finaly summer

2010-06-10T09:25:00.000-07:00

Garet has always loved music. Even before he was born we would go and listen to a country band that we know the members of. He is now getting quite a collection on musical instruments. he now has a recorder, maracas, electric drums, and a banjo. His Great Uncle Paul gave him an electric drum set.(Shown in the picture below) Oh my goodness goes he like to play with it. It is to funny he will only hit it with the sticks. Even though he knows it will make the noise if you use your hands he will only use the sticks.

We went to listen to the country band I mentioned above and Garet was helping them set up. He is going to be so spoiled by the band. The drummer was getting all his stuff ready and Garet walked up and started to watch him play a little. Well before I knew it I looked up on the stage and Garet was sitting on the drummer lap and playing with him. He thought he was to cool. Uncle Bryce is a drummer so we may have another drummer on our hands.
Memorial day outfit. We had a cook out and Grannies house for Memorial day and she had star beads that Garet decided he was going to wear most of the day. I just thought you should all see this picture.

Packing for vacation is one of Garets speciality. He normally helps me put stuff in the suit case but yesterday he thought he should be what went in the suit case. He could not figure out why he could not get it to shut. I wish I would have took video instead of still frames. It was so funny.

Sorry So Long since Last post

2010-06-04T11:09:00.000-07:00

Good afternoon to all

I meant to get on here a while ago and update on Garets dr visit. We have been going threw a time of ear infections. It started a couple months ago with an ear infection in the left ear. Antibiotics took care of that one. Then about a month later or 3 weeks ago he got an ear infection in the right ear. At the end of the antibiotics for that one he some how got an ear infection in his right ear. So this time they gave him an antibiotic shot and then another 10 days of antibiotics. We are now on day 4 of those. We will see what the next week or so brings with the ears.

Garets dr appointment with his cardiologists went really well. I was concerned that when we went in because he has not been sleeping as well. After his heart appointment I am sure the sleeping issues are having to do with teething and ear infections. Anyway he saw the main hear doctor this time and they did an ECO and EKG and also a chest x-ray just to make sure his heart was not pushing on his lungs causing sleeping issues. When all that was done everything looks to be the same as it has been. About 1/2 strength. He did ask that we come back every month for a while so we can try to adjust some of the meds to try to get the function to increase more. We will be going back on the 24th of June. At that time he will have to have blood drawn to see what his level of different stuff is doing. And then I am sure they will do another EKG and ECO to see if the increase in meds is doing anything.

I have had a couple changes to our Garet Page. I still want to keep everyone up to date on what is going on with Garet and his health. I would also like to start to add all the fun things we are doing as a family. So I have changed the title of this page to The Howard Family Blog page now. Maybe this will keep me updating it more often. Well that is what is going on with us right now. We have a vacation coming up and can not wait to just relax and have fun with all of our family.

One Year old Pictures

2010-05-10T11:06:00.000-07:00

We had Garets pictures taken this past weekend for his first birthday. He did such a good job I just wanted to share them will everyone. Just click the link below and you will be able to see them all.

http://myonlineportraits.com/ViewSession.aspx?id=e3e8eafd2ac842b18dea770981fb6f10

We were also able to go swimming this weekend and go for a bike ride. It was a very busy weekend. Below is a picture of daddy and Garet in the pool.

We also took the Three wheel bikes out for a ride. I think Garet has the best ride. He only likes to ride for about 5 mintues and then we better be somewhere he can get out and run around. I did get a new two wheel bike for mothers day and I am going to try to get a baby seat for the back and then I hope we can take longer rides on that bike.

Fun in the water

2010-05-03T12:42:00.000-07:00

It is feeling like summer in Florida. This weekend we were doing anything that had to do with water to keep ourselves cool. Garet got a cool water table from Grandma Rose and Grandpa Charlie for his birthday and we finally set it up and had a lot of fun. Garet also got a little swimming pool for his birthday and we had a great time in that.
Saturday we played in the pool and at first Gare thought it was a bath until he realised he could stand up and splash even more than he could in the bath tub. Below is a funny face from Garet to make you all laugh. We can not wait till Granny gets her pool all open and ready for us. Garet loves the water and I know he will want to be in the pool all the time. We have all of our floatation devises ready to go. Garet has even put them on at the house to get used to them before we get to the pool.

After all the outside fun we had to have a snack. This is the spot that we have for snacks at our house. when we get home from Grandmas house and mommy is getting dinner ready Garet likes to eat his snacks at his little fish table. It is the perfect spot. He can still see the tv and eat his snack at the same time. It is a little close to the carpet but he is learning really well that we do not take food in a bowl into the living room. Saturday we had a snack of tomatoes and strawberries. I think there might have been some pickle in there as well. What a combination.

It is getting closer to out next trip to Gainesville for Garets check up. The afternoon of the 27th we will be in Gainesville getting an EKG and ECO done to see how his heart is doing now that he is becoming so active. He has been doing really well. You can tell when he starts playing hard because he will start to cough. When this happens we just stop playing for a couple minutes and it seems to go away. Other than that he does not seem to be having any trouble that I can see. We will see what his doctors have to say after his visits. I am sure they will do some medicine adjusting since he has gained weight since the last visit. Well now that it is getting to be summer I hope to have more pictures to post. We can get out of the house and do not have to worry so much about colds and flu's going around. Yeah!!

If we could eat like children

2010-04-26T08:11:00.000-07:00

I remember the days when I could eat anything I wanted and never gain a pound. Oh those days were nice. Well we are running into those days some what with Garet. This child eats all the time and everything we put in front of him and he is still not up to the weight that his doctor wants him to be. At his dr appointment this past Thursday he weighed 20lbs 5 oz. This puts him in the 5% for weight. He is now 30 inches long so that puts him in the 50% for length. So now we are having to try to give him a higher daily calories intake. This can be very hard to do this in a healthy way. Most of the food that have high calories are not the best for you in other ways. Eggs and Avocados have now become our good friends and we are soon going to try out peanut butter to see how that goes.

We go back to the Gainesville in a month and we will see what they have to say and see if they have any other suggestions for us. Other than the weight Garet is doing really well from what we can see. He is a nonstop 1 year old. He is learning so fast that sometime is can be scary. He sees us do something once and he want to do it right away. It is so much fun to watch him learn and grow. I feel so lucky to have this opportunity to have all these special time with him.

Grandma Rose is living in Florida and is getting her house all set up the way she wants it. We will keep hoping and praying that Grandpa Charlie gets to move down here at some point as well. We really do miss seeing him all the time. Garet has now been staying with her during the day for the past couple of weeks. the picture above is Garet helping daddy replace the screens in the front window at Grandmas and Grandpa house
One of his new favorite things to do at Grandma and Grandpas is sit in the wagon. From what I hear it is now the spot he sits for his snacks in the morning and afternoon.

We are getting all geared up for swimming season. It is going to be so much fun to have Garet in the pool since he loves the water so much. Well until next time. God Bless

Now and Then

2010-04-20T11:47:00.000-07:00

I have been messing around with some photo art for a chat site I am member on. On this site there are about 40 or more moms and we all had our babies around April 2009. So we are going to make a short clip with all of our babies when they were born and close to there one year old birthday. I have taken on the task of creating the clip for out group. So I thought I would post a couple and see what you guys thought would be best. Final work will come from he group but you guys always have a work to input. I look forward to your comments.

Happy Birthday Garet

2010-04-05T09:16:00.000-07:00

We now have a 1 year old on our hands. What the difference it makes. Since Garet has turned 1 he has really started to show his personality more.

For lunch on his Birthday his daddy and a bunch of friends and family guys took him to hooters for his birthday. From what I heard Garet ate a lot of chicken wings and really had a good time. There were no girls allowed so I can not tell you exactly how good of a time he had. Ha Ha.

After hooters Daddy and Garet headed back to Grannies house were Garet got to take a nap and get ready for his big night out. We met up with some friends and family at Chuck E Cheeses later that evening for some pizza and game playing.

Garet like Chucky as long as he was not trying to touch him. We had a great time and played a lot of games and visited with friend.
Cake time. This was his first experience with frosting in any large amount. Thank you to Ganny for the cake and making it with Whipped icing instead of this icing.

Overall it was a very good day and I think Garet had a great time. We are going to celebrate a little bit more when Grandpa Charlie and Grandma Rose come in town next weekend. You can never have to much party time for your birthday.

Almost 1 year old

2010-03-22T11:09:00.000-07:00

In just a week and a half we will have a 1 year old on our hands. Garet is keeping us very busy these days. He is now walking all over the place. He wants to help us do everything we are doing. It is so much fun. So far I would say this has been the best age. All he wants to do is play and read books.

He will do anything that make you laugh. If he sees you laughing at him he will continue to it over and over again.

His newest trick is climbing onto the couch all by himself. So now he think he is a real big boy. This picture below is from the first night that he started to climb all by himself. I went to the kitchen just a couple steps away and when I looked back in the living room he was chilling on the couch with his snacks and milk and watch tv. Thank goodness daddy already tough him how to climb off the couch safely.
He now has two teeth. You can kind of see them in the picture below. He is working on the two upper teeth. You can see the little bumps were the teeth are going to come in at.

Here is a medical update. We are now only having to go the cardio clinic every three months so we will not have to go back until the beginning of May. They changed some of the doses of his medication so now we only have to do the medicine thing 2 times a day instead of 3. Dont get me wrong he is still taking a bunch of meds those 2 times a day but now we can take med when we get up in the morning and then we do not have to worry about them again till bed time. It is so nice. It feels like we have some sort of normal like. We can go for a day outing and do not have to take the cold pack and make sure we go back to the car to give meds and 1. Yeah. Garet has been going to day care a couple days a week for the past month or so. He really enjoys playing with the other kids. Soon Grandma Rose will be moving down here and Garet will get to play with some other kids over at her house.

Now that the weather is finally warming up Garet always wants to be outside if someone else is. He even tried to put on daddies shoes the other day when I told him that he had to have shoes on to go outside. Well I will try to not make it as long this time between posts. I hope to get a new camera for my birthday so I will be super motivated to take picture and post them right away. Hope you are all doing well.

First Camping tirp

2010-02-22T09:13:00.000-08:00

This was our home away from home Friday threw Sunday this past weekend. When I say home I mean it is almost as big as our home. HAHA. It worked so perfect.

We were able to sleep our family and then the 3 friends that Garet brought along.

We had to bring a lot of toys for Garet to help keep him occupied, but his two favorite toys were some sticks that he found on the ground and then a light toy that Dylan brought with him.

Here are a couple other toys that were lots of fun to have with us.

His walking toy that his aunt Amanda bought him for Christmas was a huge help. He was able to get around and not be on the ground not getting completely dirty all the time.

His Wagon was also a git help. Anytime he was getting tiered or just did not know what he wanted to do we would put him in the wagon and off we would go and that would keep him happy for a long while. It also worked well for a bed for naps and also so we did not have to put him in the tent all by himself.

Here are a couple of the friends that Garet brought with him camping. This is Dylan and Sierra being silly around the campfire.

Here is our other friend that came with us. Katy was our tree climber of the weekend.

Overall the weather was pretty nice for us. It did get a little cold at night but we had blankets and warm bodies in our tent so we did not get to cold. Below are just some more pictures I wanted to include. Hope you all had a great weekend.

Garet and Daddy.

Garet and his crazy morning hair

Garet and Mommy

Garet in his all our FSU outfit. Go Seminoles.

10 months old and on the go

2010-02-02T12:42:00.000-08:00

Garet is now 10 month old and there is no stopping his now. At 10 months he is now
31 inches long
20lbs
crawling like a crab
Walking around as long as he can hold onto something
Eating everything he can get in his mouth
He will eat baby food as long as there is no other food around
As soon as there is anything other food around he wants to eat that
Drinking out of a sippy cup but still prefers his bottle.
His heart is still stable at about 40% or normal pumping
Sleeping most of the night threw
Loves being outside and can not wait for the weather to stay nice
Babbling all the time
He also mimics everything we say not with the word but the sound
Plays ball and can not wait till he can play fetch with the dogs
Loves to ride in his wagon
No longer wants to be held unless it is almost bed time and you have a bottle for him
Needless to say he is doing really well and we are so proud of him. Below are a couple pictures and I am trying to get better about taking more pictures again. I have been slacking.
the above picture is at Uncle Dons house and he loved having a chair that was his size. Now we have to find him one before we go camping for his first time in a couple months. The below pic is Garet watching Daddy cook dinner. This is were you will find him when anyone is outside. Talking to the door thinking that you can hear him outside.

I hope you are all having a great new year.

9 months old and big boy toys

2010-01-06T11:44:00.000-08:00

I can not believe that 9 months has pasted already. We no longer have a baby. I am already starting to miss the days that I could hold him all night long I wanted to. The only time that he will let me do that is when he is so sleeping and does not have the energy to be moving. And that does not happen very often. Even when he gets this tiered he is still trying to play with toys until he pretty much falls asleep playing. Well I was just looking back at some of the pictures from when we first brought him home from the hospital. I really just wanted to get on and show you the two new pictures of his big boy toys. I now understand what people mean when they say do not make then grow any faster than they already do. Hope you enjoy the pictures.

I just thought I would add this picture. This is from the first day we brought him home from the hospital.

Getting everyone all up to date

2010-01-04T07:24:00.000-08:00

It has been a while since I have done an update and I am so sorry about that. Because of that this post will be kind of lengthy. We had a great holiday season in the Howard House. Garet was such a help with wrapping gifts and getting everything ready for out trip up north.

We left my work around 2 in the afternoon on the 17th. Garet did a great job in the car. We were able to stop and let him out and play a little bit and we got a hotel room later that evening and arrived at Grandma Rose and Grandpa Charlies around 11 in the afternoon on the 18th. The 18th was Matt birthday so we went out with my two brothers to help him celebrate the big 28. We had out family Christmas on the first Sunday that we were there. It was so much fun. Garet at first was sleepy and we thought he was going to fall asleep during gift time but he decided to stay up and have a good time with us. He got so many new toys and also got a new Wagon with big wheels that are perfect for out dirt yard. He was more interested in climbing on top of the box instead of what was in it.

Later that evening Garet and Daddy decided to put together his Wagon. I am not sure how much help Garet was but it sure was a cute picture opportunity.

Out of everything that Garet got for Christmas his favorite thing to play with was not a toy. It was his Great Grandmas walker. When ever she would get into his view he would stop everything he was doing and make a b-line for the walker. There were many times that we had to stop him or he would have walked right under her feet to try to take the walker from her. It was to funny.

We all went to church together Christmas eve and then when we came home I put Garet into his Christmas pj's He was to cute. I could not believe that he left the hat on but he did. He wore it for the rest of the night and for all the pictures that all the family wanted to take of him that night.

The ride home was a little longer than we might have hoped for. By the time we started home Garet has a little cold and was in no mood to be in his car seat for long hours. We did manage to get about 9 hours under our belts on the 26th. We then were able to stop and get some sleep and had to get up early the next morning so we would get most of the driving done while Garet was still sleeping. Needless to say we were packed to the roof on the way home.

When we did stop that night. The last thing that Garet wanted to do was sleep. He kept moving until he just collapsed on the bed and was out. It was just to much excitement for one little guy.
Well all I need to add now is all the new things that he is going. Garet is now crawling and there is no stopping him and then as soon as he gets to the couch or the table or anything that he can pull himself up on he is doing that and walking around as long as he can still hang on to something.
It is so exciting to see him doing these new things but it is also scary not knowing how his little heart is going to handle all the new movement and excitement. We took Garet over the Shands once we got back from out trip since he was not acting like his normal self. Dr Fricker did say that his heart function is down a little bit and the size of his heart has gone back up a little bit. He said this was ok. This was going to happen a little bit as he starts to walk and do more activities we just have to make sure that he is getting enough calories to keep his weight up in case something does happen. Our next apt is on the 28th and hopefully everything will be back on the right track of getting better. He is now up to almost 19 lbs and I am not sure how tall but he just keeps growing taller and taller. He is also eating real food. I now have to watch what I order off of a menu when we go out. It no only has to be what I want to eat but it has to be what Garet can eat as well. If we are at a restaurant we will not eat his baby food he will only eat food off out plates that we give him. I know it will not be much longer and we will have three to pay for when we go out and we will have to start finding the kids eat free places to help us save money. HAHAHA. Well I hope this gets everyone up to date and I will try to not take this long to update again.

Getting ready for Christmas and our first hair cut

2009-12-07T05:50:00.000-08:00

It has been quite a while since my last post and I am so sorry. Things get crazy around the holidays. We are getting very excited about going to IL for Christmas so we have been trying to get everything ready to go. One of the things on our list was to get both Garet and Matt a hair cut. Garet hair was starting to get long and a little messy all the time. We had a little bit of time on Saturday afternoon so off to the hair cut place. He did really well. He wanted to keep looking at the scissors and Barbara cutting his hair. As soon as we started having Daddy take pictures and getting his attention focused somewhere else it actually went very smooth.

He looks like such a little man.

We have also been working on crawling, and going from his tummy to a sitting position. Garet gets so mad when he gets to him tummy and then can not do anything once he gets there. All evening Friday and most of the day Saturday and Sunday I played with him on the floor as much as possible. I would crawl around on the carpet as much as I could as well. Well after only a couple days of doing this he is now moving across the floor. He is also able to go from his tummy to sitting. He is so much happier now playing on the floor. He no longer gets stuck on his tummy and he can not get his hands on just about anything he wants to so he no longer gets upset about that. I can not believe how fast they learn.

We also cleaned out Garets room of clothes that are to small and toys and swings that he no longer used or is to big for. I took them all apart and got them packed away good just in case we ever need them again. It was kind of sad packing that stuff away. He is no longer a little baby and has become so independent.

Garet should be going back to his normal dr's this week some time to get his next synagis shot so we will be ready to go up north in the cold weather. I am excited to see how much he has grown. He really loves food and we really have to watch what we eat in front of him. No matter what it is he things that if we are eating it he should be able to eat it as well. Below is a picture I just thought was to cute not to post.

I hope everyone has a great holiday. Just in case I do not post before we leave to go up north. Have a Merry Christmas and and Happy New Year.

Fun at the park

2009-11-09T12:38:00.001-08:00

A couple Sundays ago we were running very early for Church so we decided to stop off at the park for some play time. We could not do to much playing since we were in our church clothes but we did have fun on the swings and the slides. This was Garets first time to the park and he had so much fun.

He really like the swings. We have a little swing at home that we have to find the right tree to hang it in and then he can have all the swing time he would like. The weather is starting to get cooler in the morning and the evening so our outside time is not as long as it used to be. I know we will be trying to make it to the park a little bit more on the weekends if we can.

We are all looking forward to the upcoming holidays. Thanksgiving and then Christmas. We will be traveling over the Christmas holiday and are so excited that Garet will have the change to meet more of his family up north that he has not had a chance to meet yet. This traveling with be Garet first long long car ride, but we are going to try to do a lot of it at night while he is sleeping. We will see how it goes. Cant wait to see everyone.

Look at the monkey

2009-11-04T08:44:00.000-08:00

We found this cute little monkey on holloween and desided to take him home with us. It was a good thing it turned out to be Garet or we might have been in some trouble.

He really liked his costume because it was so fuzzy, but I think he thought it was his night time sleep sack because after about 5 houses of trick or treating he was fast asleep in his stroller.

Trick or treating was fun, Mommy and daddy got a lot of good candy to have around the house for the next couple of months. We did let Garet have a taste of some candy but not to much. We do not need that little monkey bouncing off the walls. He already bounced on the couch and the bed and any other place he can find to bounce.

Pumpkin Patch

2009-10-29T12:09:00.000-07:00

Last night we made out way to the Church Pumpkin patch to pick out some pumpkins. We had tried a couple other night but it seemed that every time we tried it would rain that evening. Last night the rain held off long enough for us to get there and have a little fun picking out the perfect pumpkins.
Garet has a great time picking out his pumpkin. He just thought it was to cool to bang on the pumpkins like a drum. They all made different sounds when he hit them.

Daddy thought it would be fun to set Garet on top of the pumpkins. I was not sure at first but he loved it and actually thought it was funny. By the time we got home it was to late to carve them. So that is our goal for tonight. I am going to attempt to bake the pumpkin seeds so we can have a taste treat when we are all finished.

Garet is getting so bid

2009-10-28T12:40:00.000-07:00

Just thought I would show some cute pics to everyone. The above picture is from a night when we were up at a local resturant listening to Black Cleek Risen (A Band that we have become good friends with over the past couple of years). Garet was styling in Katies sun glasses.

The other two pictures are right before bed time. Garet likes to chill on the couch with mommy and daddy while we try to whind down before bed. The past couple of night that has not been as easy to do. He has learned to scoot al around so he does not want to sit in one place for any lenth of time.

we will be back with more picts and I am trying to figure out how to put video up as well. We have some funny ones to show you all.

Home Again YEAH!!

2009-10-14T10:14:00.000-07:00

Yeah we are home again. Yesterday Garet got to come home around 2 in the afternoon. His cough is still pretty bad but all the test that would indicate that anything else was going wrong with his heart have came back negative so there was no reason for us to stay at the hospital. There final observation was that it was a case of broncialitis (I am sure this is spelt wrong). So they have added 2 more meds to his list for the next couple of days. H e is still on the breathing treatments as well, but now it is only when he starts to get really stuffed up. He was so excited to be home and back with his all his toys and be able to move around again. While he was in a good mood for a little while we took some pics of him in his car his Uncle Pete restored for him.

The last time we tried to take pics in this car we had to hold him up and someone had to be in the pics with him. This time he can sit up all on his own.

He can even make it go backwards. We were joking that his car was broke since it could only go in reverse. I think it will be a while before he learns how to peddle to make it go forward.

He had so much fun sitting in it and pushing himself backwards little bits at a time. Well again thank you so much to everyone who is keeping us in there prayers. It really makes a difference and helps us keep our moods up while we were sitting in the hospital only being able to see outside threw a window. Hopefully the rest of the cold and flu season will be a lot less dramatic. I would love to be able to just post happy pictures on here for a while.

Long last week and weekend

2009-10-13T06:49:00.000-07:00

This is the first chance that I have had to sit down at a computer (My lunch break at work)and let everyone know what has been going on this past week. Last week on Monday Garet got all of his 6 month shot, flu shot and got a weight check so they could ship his synagis shot. (A vaccine given to preemie babies and babies with special illness to prevent RSV during the flu season) The pharmacy was suppose to have already shipped this last week but for some reason wanted to do a weight check before sending it out. He did fine getting all of his shots and him and daddy went back home. Then on Wed he started to get a little bit of a cough. We did not think much of it until Wed night we were working the church pumpkin patch. Garet had had his normal bottle and about 30 minutes later got sick all over. At that point his cough seemed to start to get worse. So back to the Dr Garet and Daddy went on Thursday to have a listened to his cough and check him out just in case. They said that is was most likely just a little cold or a small reaction to his shots and that they could not hear anything worried them. So home they went again. Friday Garet went to his Mimi's house under the precaution that he might not be feeling so well. I called them a couple time during the day and Mimi said that he had gotten sick again with his formula. So I decided to call Dr Fricker in Gainesville and get his opinion on what was going on. He said that if he was having an issue keeping his formula down and was having any dificulty breathing that he would like to see him later that Afternoon. So I got off work early and went to pick him up with plans to go to Gainesville for a check up. On my way home Dr Fricker called and said since his normal Pediatrician had just seem him the day before that it might be wise for us to stop and see her before driving all the way out to Gainesville. So that is what we did. As soon as we walked in and she listened to him she said that she thought he had RSV. So they started did a breathing treatment in the office and sent us home with breathing treatments every 3 hours for what we thought would be for 5 days. They stopped formula and put him to a clear juice/pedialite diet. The breathing treatment every 3 hours seemed to help a little. But only about 30 minutes after the treatment he sounded just as bad as before. We made it almost threw Saturday doing what we had been told to do. But when it got to Saturday evening about 7 he was really having a hard time breathing and was just not a happy boy at all. Matt and I then made the decision that since the symptoms for RSV are the same as if something is going wrong with his heart that we were going to take him in. Since his dr had not done the test to confirm RSV we did not want to go on the chance that that was what was wrong. We decided we were going to take him to Gainesville to have a chest x-ray and ECO just to make sure that it was not something more serious. We called Dr Fricker and off to Gainesville we went. We sat in the back of the emergency room until about 3 in the morning when they finally had a room open up in the PICU and up we went to the all to familiar 10th floor. Once we got him settled and got a couple hours of sleep the test started. They tested for RSV (came back negative), they tested for multiple kinds of flu (All came back negative) The did an ECO( looks the same as the last clinic visit) they even put in a IV to make sure if something were to happen that they had easy access to giving him med. Poor baby they could not get an IV in his arms and they did not want to put one in his foot because he would most likely pull it out. So they put it is his head.
That is why in all these pictures he has a cool dinosaur head band to keep him from messing with his IV. Any way test after test and nothing is coming back telling us what it might be.So they have pretty much decided that it is a bad case of bronchialitis (baby bronchitis) and since this is making such a flem build up that his formula was making it even thicker and he was unalbe to keep it down. So we thought that they were going to send us home yesterday with his breathing treatments and additional meds to help him get threw it. Then one of the dr in the PICU decided the wheezing and crackling sounded a little like it could be allergies or Asama as well. So in order to rule these out that would have to give him a 5 day round of Steroids to see if they could get the cough to go away. They were also concerned that since he has only been able to hold down fruit drinks and that he is not getting his formula that he may start to loose some weight if they did not get the cough taken care of there in the next couple of days. So instead of going home we are still in the PICU for a couple more days. This is just fine with me, I would rather be safe and have him monitored then to go home and have to come back in a couple days because it is not getting better.

Above is Garet sucking on a bagel Sunday morning. He had been in a some what of an ok mood Sunday and Part of Yesterday until he decided that he had had enough of just sitting in bed and watching tv. So last night he was not such a happy boy. So now they have done one round of the steroids and they have done 2 doses of the meds that are suppose to help if he has some sort of flue that they were unable to test for. He should be getting another dose of steroids today. Last night he was able to start keeping a little bit of formula down so we are working on that slowly. We are just praying that one of the meds that they are giving him will get rid of this nasty cough and will get him back home soon.

Yesterday was a mommy and Garet day in the PICU and today I had to go back to work so today is a Daddy and Garet day in the PICU. Yesterday they were talking about moving us down to the 4th floor (Pediatrics) but he will have to have a room of his own down there and they do not come very easy. Hopefully today they will listen to him and we will be able to go home and ride the rest of it out at the house. It is so scary that this is only the first month of cold and flu season and we have already had to make a trip back to Gainesville. This is just a big reminder to us that if we are going anywhere we are going to have to be careful if anyone is sick to just stay home. This is hard when you hang out with family a lot and a lot of cold and flu do not show up until after that person has already been contagious for a day or so. Big reminder to everyone WASH YOUR HANDS ALL THE TIME!!!!!! This is so important. We we still hope to be able to get out and visit everyone but if for some reason you are not feeling well or even have a small cold please do not be upset if we show up and decide to leave. We love to visit family and friend but we do not want to send any more time in Gainesville then we have to. Thank you for all the prayer that have been continuing to come our way and We play that everyone has a healthy cold and flu season. I will be back when we have some more updates. Have a great day to all.

Doctors update

2009-10-05T10:21:00.000-07:00

On the 1st of October we had another clinic visit over at Shands and it went very well. He is still growing in both weight and length, and this is very good. He got to see all his normal friends there and each time they are so happy to see how well he is doing. They did the EKG and ECO and dr Fricker said that is looks like everything is still continuing to improve at a very slow rate. The big news was that he will no longer have to be seen in the transplant clinic. They are going to start seeing him in the Cardiomyopathy clinic. This is very exciting. They are not going to take him off the transplant list but they feel he is doing well enough that the transplant teem is no longer the team that needs to see him. We got to meet the fellow dr that is in charge of the Cardiomyopathy clinic and she seems really nice and Garet really seemed to take right to her. Dr Fricker is still going to be the main guy over top of everything going on with Garet but we are going to be making the transition out of the transplant area. Again we are still leaving the door open in case we do have to go back to that area but hopefully that will not happen.

Matts doctors visit last week went pretty good as well. The Cardiologist listed to his heart and did an EKG and said from that he did not see anything abnormal. He goes back this week to have an ECO and and a treadmill stress test and see how is heart is looking and reacting to different work loads. So far so good in that area. We will have a little bit more info after his appointment on Thursday.

We have been learning that no matter what we do everything in our lives is in Gods hands and he will help us threw anything he sends our way. It is very hard some times to just let go and have that strong faith, but we are trying as hard as we can.

Garet is now sitting up all on his own and we are working on crawling. The crawling right now is more like putting his head on the floor and lifting his butty in the air. I know one day he will put it all together and we will not be able to stop him. That is what happened with sitting up. One day we had to be right next to him all the time if he was sitting up and then the next day he was doing it all by himself. It is so hard to believe that he is now 6 months old. I am going to try to get outside this coming weekend and take some pictures of him so I can post some up to date pics on this site. The weather is starting to get cooler so we can get out and do some pictures by the river or something.

Well until next time. I hope you are all having a great week.

New info from the howard family.

2009-09-25T04:57:00.000-07:00

So lets start with the fun stuff. Garet is doing really well with sitting up on his own. Here is the past week or so he has been getting much stronger. He is starting to like his stomach and is starting to move around a little bit as well. I do not think it will be much longer before he starts to crawl all over the house. It is so amazing how fast they change and learn new things. We are now eating solid foods at dinner each night. That is helping with sleeping all night long. He can now go from 8:30 at night till 5:30 in the morning without a bottle. He does still wake up a couple times but goes right back to sleep.

So as most of you know we have found out that the condition Garet has is caused by a genetic mutation in one of his heart genes. Well Matt and I had to go and get tested as well to see if one of us has the gene mutation as well. Well we got our results back and Matt has the same mutated gene that Garet has. This shows how unpredictable this mutation can be. Matt is now 27 and it has not effected him yet in his life. He has been very active in sports and every other activity you can think of. Garet was only 1 month old when if effected his heart. So we are now starting to see why it is so hard to understand what is going to happen next with this genetic stuff. So now Matt has an appointment with a Cardiologist next week to have an EKG and Eco done to see what his heart looks like right now. We are praying that everything looks fine. If it does they will tell him things that he can change in his life style to keep his heart healthy. If that is the case they will most likely have him come in once or twice a year just for checkup to make sure everything is still looking ok. So this is the step we are on right now. WE are now working on informing all of Matts family so they can make the decision to get tested if they want to. The first two people that we are hoping will get tested is Matts mom and Dad. If it comes back that nether of them have it then no one else will have to be tested. This can eliminate a lot of unnecessary stress on the rest of the family. If they choose not to be tested then both sides of the family will have to get tested so they can have peace of mind. If the rest of them do get tested and it comes back that someone of either side is positive as well, we will then know what side of the family it has came from. Having the adults in the family get tested first is not just for them but for there children as well. And also if there children decide to have children one day. We now have this information in our hands and what we all decide to do with it our decision. I would just hate to see someone not get tested and then have something like what happened to Garet happen to them knowing it could have been prevented or seriously reduced. Well that is all the info that I have on that. I am working on getting some web sites together with more info on what is going on and what could happen in the future.

I will end with another cute picture. This is Daddy and Garet selling shrimp last weekend. Garet really love being outside and thinks it is so much fun helping daddy sell shrimp.

All of out new tricks

2009-09-18T11:31:00.000-07:00

Each night we like to have play time right after dinner. We lay out a blanket on the floor and get down and play with all the toys that we have out in the living room. One of Garets new fun things to do is to have us put his shapes on his nose. He thinks it is funny and likes to knock them off on his own. The circle fits the best, but the triangle works well to.
We have just in the past week started to do Baby-led feeding (BLW). We were not having any luck feeding garet the purse's with a spoon. He would get fussy and not want to eat most of the time, or he would eat a couple bites and then he would cry and not want any more. Well I have been doing a lot of reading on this style of babies learning to eat and I think it is a great think for us to try. Each night we sit down to dinner and we put some of the same food that we are eating on Garets tray and let him play with it and put some in his mouth if he wants to. This forces us to not eat a little better. we do not cook with as much salt or butter and reduce the sugar intake. This is suppose to help him learn textures and also learn to feed himself and learn when he is full and all that fun stuff. I really hope it works Well any way the picture below is one of our first successes with this. Matt and I were eating some Ritz cracker and he was sitting there watching us and finally reached out and acted like he wanted one. So we handed him one and he went to town on it. I expected he might gag or even spit up a little while trying to eat it but he did a really good job. He would take a bite and then you could see that he was chewing and then swallowing. It was so much fun to watch him learn right there like that. I had to go out and buy some low sodium Ritz crackers for him so he does not get to much salt. He also ate a little bit of chicken, green beans and mac and cheese. It is so much easier to let him eat on his own. I makes my dinner easier not having to feed him and myself. We have only been trying this for about a week so we will see how it continues to go.

I think he have the next Mozart on our hands. HAHAHA. He does really love his piano and really looks like he is concentrating when he plays it. He can play with his hands and feet. Below is a video with his hands.

Total Relaxation

2009-09-09T08:58:00.000-07:00

What I wouldn't give to be able to sleep this sound for just a couple hours. It is so funny the way little ones can fall asleep and sleep so sound. The past couple of night have been the first night that Garet has truly slept threw the night. He went to bed around 9 and slept until 6:45. Grandma Rose said it was because he put him to sleep the past 2 nights. Well since she had to go back to IL today lets home that mommy and daddy can put him to sleep the same way she was. It has been a very nice couple of nights being able to stay in bed all night long. This week Garet is getting to spend some time with his Granny and next week he is going to start going over to his nannies house. All the kids call her MiMi. So when I start to speak of her in my posts you will know who I am talking about. We are so excited to have found MiMi and can not wait for Garet to get used to going over to her house during the week while we are at work. No health update right now. Things have been going about the same. His next dr visit is not until the 28th and I am sure by that time he will have gained so much weight. He is getting so big. As soon as I have any updates I will let you all know. Hope all is going well with everyone else.

Just some cute pictures

2009-09-03T05:45:00.000-07:00

This one is Garets fuzzy hair after he got out of his bath the other night.

The next couple pictures are just some that we took the other night while we were playing in Garet room

This last picture is one of a series that Daddy took yesterday. Garet and Astro are becoming good buddies now that garet can play with him a little bit. It is so amazing how dogs now that they have to be gentle with him.

5 months old today

2009-09-01T12:27:00.000-07:00

5 months old today. My goodness how time has gone so fast. I know it only continue to go faster. We feel so blessed with everything that has gone on so far. we know that Garet is going to grow up to be a very strong individual. We can see it in his personality already. He seems to surprise us everyday with all the new things that he is learning. Above is a picture of his first bath time in the real bath tub. He is getting to big for the sink anymore, plus he has learned how to splash and we would end bath time with the kitchen floor and surrounding counter tops being soaked with water.

It looks like we have found a great person to take care of Garet for us while we are at work once Grandma Rose goes home to IL. It looks like Grandma is going to be going home in about a week and we will miss her so much. It looks like the person that will be caring for Garet will be like a 3rd grandma to him and will love him just as much as we do. We feel so blessed to have found her and can not wait to have her be a big part in helping us raise Garet in a great way.

We are going to try to make it to the beach this weekend with Grandma Rose. She seems to think that she should make it to the beach at least one time while she is in Florida and we agree with her. She has done so much work while she has been here that we would love to have a nice relaxing weekend for her last weekend here. We should also get some cute picture of Garet at the Beach. This will be his first time to the Beach and I can not wait to see what he thinks of the sand and all the water.

Hello from Garet

2009-08-26T12:00:00.000-07:00

I am getting so bid and wanted to let you all know how I am doing. As you can see by my picture I am getting so big and starting to do so many new things every day. I have now rolled from my belly to back and back to belly. I do not do this very often but when I do mommy and daddy cheer for me so maybe I will start to do this more often. I had a cardio dr appointment on the 20th. It went really well, they did the normal stuff. They weighed me and on there scale I weighed 14 lbs and 11 oz. Mommy and Daddy thought there scale might be off so a couple days later they took me to my regular doctor to get a weight check and there scale said I weighed 15lbs and 9oz. They thought that was more like it. I am still right around 26 inches long. They also did the EKG and ECO and it looks like my heart function has gone up a little bit. It was around 30% and now they say it is close to 37% so yeah my heart is pumping a little bit better. I knew all the jumping I had been doing in my jumpy thing was going to pay off at some point. They took away one dose of another one of my diuretic that make me pee. Now I only have to take it in the morning so that helps with my super wet diapers in the middle of the night. Most nights I can go without Mommy or daddy having to change my diapi. They have also upped my medicine that is helping my heart to pump more. It seem every time they take a med away they are giving my more of another one. That is ok with me because I am getting really good at taking all my meds and most of the time do not give mommy, daddy or grandma rose to much trouble when they try to give them to me. I also got to go and visit some of my nurses in the PICU when we were in Gainesville. It was so great to see them and show them how big I am getting. Granny made some cookies for us to take with us. Those nurses always like to eat food.

Mommy, Daddy and Grandma Rose have starting to introduce a bunch of new and yummy foods to me. They will try a new one for 4 days before they give me another new one, just to make sure I do not have an allergic reaction to any of them. So far so good. I have had sweet potatoes, Carrot, and green bean. My favorites are the fruits. I have got to try bananas and apple sauce. I like them so much that they make me laugh as I eat them. I am still eating cereal with my fruit for breakfast and I of course still love my bottles. I am eating about 6oz at each feeding. No wonder with all this good food I am gaining weight so well.

Well that is about all that is going on in my life right now. Mommy and Daddy have been busy looking for someone that I can go and stay with during the day while they are at work. Grandma Rose is going to have to go home at the end of September and I will miss her very much but I understand that she has to go home and take care of Grandpa and Mugsey(there dog) We have visited with so many really nice people but they have not been able to make any decisions yet. I hope they find someone great that will help me learn all that I can.

Well I think I am going to try to take a nap now so I will talk to you all again soon. Thank you so much for all the prayers from everyone they are really helping me continue to grow and gain strength.

Busy and Exciting Weekend

2009-08-18T05:18:00.001-07:00

This past weekend was a very special weekend for our family. We were finally able to have Garet baptised. We had planned to have him baptised before he went into the hospital but that was delayed a little while. So this past weekend we had a great time with family and friends. Garet looked like such a little man in his outfit. He is just growing up to fast. When we were sitting at the house before church I was kind of getting worried because Garet had not taken a nap yet that morning. Well the short car ride to church was enough to do the trick. He slept threw the first part of church and woke up just in time for his baptism.

Garet and Pastor Roger did a great job during the baptism. Garet was in a good mood and had no issue with having Pastor Roger putting the water on his head. Garet even gave a few smile as Pastor Roger walked up and down the isle with him to show him off to the church.

We were very lucky to have so many family and friends there to share in this exciting time in Garets life. Uncle Erik was able to come down from IL and stand up and take the responsibility of being Garets God father. Aunt Amanda was there as well and will be the best God mother that Garet could ask for.

Garet has started to like having his picture taken so he had no problem with all the pictures that we wanted to take after church and then some more when we got back to the house.

When we got to the Church Sunday afternoon, there were some beautiful flower waiting there for Garet. His Great Aunt Ginny from IL had sent flowers to the church to help make it look beautiful on Garets special day.

When we got back to the house we were all able to change into some comfy clothes. Aunt Sheri had bought all the boys matching outfits and wanted to take on the task of trying to get them to take some pictures together.
We got some pictures of the three cousins all together and from these we can for sure say that boys will be boys and it will be fun to show them these when they get older.

We had a great cake that Grany brought and Garet thought it would be fun to stick his foot in it while we were trying to take his picture. If he had been just a little bit older we might had let him lick it off, but we did not want to take any chances with giving him really sugary food like that.

Garet got some special gifts to help him remember the day when he gets bigger. He did a great job of opening them up. He was more interested in the paper than the gift but it was fun to see him try to rip the paper and put it in his mouth.

When everyone had gone home it was nap time for both Garet and Grandpa. This is the first time in a long time that he has taken a nap on his belly like this. He normally does not take very long naps on his belly because he always wakes himself up. But with it being such a busy day I think he could have slept anyway. What a better way to sleep then on Grandpas belly.

We ended the weekend with the Jaguar game and daddy had to make sure that Garet had his #1 fan shirt on to give the Jaguars as much help as we could.

We have many more pictures is anyone is interested I will have them burned on a cd or I can email them out to you just let me know. After this weekend we are ready to just have a few weekends to just sit back and relax.

One Answer creates many more.

2009-08-10T10:22:00.000-07:00

We have finally got an answer, kind of. I got a call the other day from the Geneticists at Shands. They got the last of the genetics tests back for Garet. We have found out that he has a genetic mutation in one of his hear genes; we will just call it a bad heart gene. In most cases people never get an answer as to why this heart condition has happened. We should consider ourselves lucky to have an answer as to what has caused this. Most people are told that it can be caused by a virus or a gene mutation that is not traceable and that is what they have to live with. In Garets case they were able to locate the bad gene and tell us that it as the cause of his problems. Unfortunately it does not chance what we can do to help him. We will still continue with the same meds. This does not open any other doors for corrective surgery or anything like that. We still have to let his body along with the meds do what it is going to do. What this does mean is that Matt and I need to go in and have blood work done to see if either of us has the bad gene and that may be how Garet got it. It could be the case that Garet is the started of this bad gene and if that is the case there is no way to find out why he got to be the first in this family. If it turns out that Matt or I have the bad gene as well then we will know how he got it. I know some of you are most likely thinking that if we one of us has the bad gene why have we not had heart issues like Garet is having. Well I guess some people can carry the bad gene and it may never effect there health, or it can wait and affect the heart later in life. It is not very often that it affects people as fast as it did with Garet. So now that we have one answer it is opening the door for a lot more question. If one of us has it then we have to look at the option of what we can do to prevent it from affecting our heart in a bad way. It also brings the questions of if we decide one day to have any more children. If one of us has it and we decide to get pregnant on our own again it would be a 50/50 chance that that child would also have the bad gene. (Again we would not know when or if that bad gene would affect them.) Also if one of us has the bad gene then we would strongly suggest that our immediate family would get tested as well. That would be mom, dad, brothers, and sisters. Hopefully with this knowledge we can help to prevent this from happening to any other little ones in our family or help this from affecting anyone in our family as they get older. But anyway we have a few steps before we have to start worrying about that. Like I said it has given us one answer but has now opened a bunch of other answers we would like to have. We have our appointment on the 20th of this month for a check up for Garet and to have our blood work done. We will hope to have the next answer about 3 weeks after that. But right now we are so thankful to have Garet and to have him be doing as well as he is. He is growing and doing new things everyday. It is just amazing to watch him learn thing for the first time and see the amazement on his face.

We have his Baptism this Sunday and again we are inviting everyone out to help us celebrate and also for a cook out at our house after church. Please come and help us celebrate this special day in ours and Garets life.

4 months old

2009-08-04T07:37:00.000-07:00

Yeah we are 4 months old. We had our 4 month old doctors appointment this morning to get a couple shots and see how we are growing. Garet is now 26 inches long and weighs 14.5 lbs. We are right in the average on the weight and we are a little bit above average on the length. Garet had to get a couple shots and a couple meds by mouth. He was so brave he only cried for a couple minutes and then he was ready to go home. It is so much fun to go to the normal doctors, they are always so excited to see Garet and see how much better he looks and how much bigger he is getting.
Above is a fun picture that grandma rose took of Garet with some of his friends from the hospital. These are friends that have stayed with him in the hospital and now they keep him company at home. We have hit quite a few milestone here lately. The other day Garet started to roll over from his tummy to his back and he tries so hard to get back over to his tummy but is not quite strong enough to get all the way over. His hand eye coordination is getting a lot better as well. if you hold something near his hands he will reach for it and most of the time he can line his hand up and grab it. Lets see what else is new since I posted last. he is so close to being able to sit up all by him self. He can do it for a couple seconds and then he tends to lean to one side or try to bend down and mess with his toes. I am sure it will not be much longer and he will be sitting up like a big boy all the time.

The dogs have been doing really well with him. They all have a really good tolerance for him. He can do pretty much anything to them right now and they just look at him and try to give him kisses. Above is a picture of Garet and Astro and Daddy's legs. They like to be around his so much that we have had to put up a large baby gate to section off the carpet in the living room. The dogs can still see Garet and he can still see the dogs but they are not allowed on the carpet anymore. Since Garet is starting to get down on the floor more we wanted to try to reduce the amount of dog hair on the carpet and it seems to be working really well.

Upcoming Baptism. We hope to see as many of you as we can at Garets Baptism. This is going to be a big celebration. We had it planned to have him Baptised before he went into the hospital but all that has delayed things a bit. But we are ready to see everyone and celebrate that we have been giving the blessing and opportunity to have him baptised. The church service is going to be on August 16th at 11:00 and then we are going to have a little lunch cookout at our house after church. Even if you can not make it to the service we would love to be able to visit with as many people as we can at our home. hope to see you all there.

You are all invited to Garets Baptism

2009-07-23T11:12:00.000-07:00

I just wanted to stop in quickly and let you all know that we are going to be having Garet Baptised on August 16. We would love for as many of you to come and help us praise God for this opportunity to he has given us with Garet. He will be Baptised at the 11:00 service at Middleburg United Methodist Church. We will also be having a lunch cook out at our house after church. Please if you plan on coming to the cook out give me a call or drop me an email to let me know. We want to make sure we have enough food for everyone.

Sorry its been so long

2009-07-20T10:08:00.000-07:00

Sorry it has been so long since I last updated. Since I have been back to work I have even less free time when I get home. Lets start with the health stuff. I think this is the most exciting part right now. We had a Cardio doctors apt this past Thursday and it went very well. Dr Fricker said that from the ECO it looks like some of the swelling of Garets heart has gone down. It looks like his heart is 25% smaller this time then it has been on the past ECO's. This is so exciting. The function is still only at 30% instead of 70% but with the swelling going down that means that the medicine they are giving him is starting to work a little bit. They have upped the dose of his medicine that is helping his heart to squeeze better so we hope that that starts to show some improvement as well. So overall the medicine is starting to do what they hoped it would. That is going to be a very gradual increase as he gets bigger. So that is our exciting new update on the doctor side. Now onto some fun pictures and some more things that are new and exciting.

Garet is now 24 1/2 inches long and weighs 13lbs and 5 1/5 oz. So he is growing really well. This is something that the doctors track very closely to make sure he is grown enough. They did tell us that we could start to introduce some cereal to him a couple time a day. So on Thursday we got to experiment for the first time with solid food. He did a really good job for his first time.
He is now getting used to what he is suppose to do when the spoon is in his mouth. I can already see we are going to have a patience issue. Not with me but with Garet. Once he got the hang of swallowing the food, I was not fast enough and finally had to stop and give him a bottle. Each time we try to feed him cereal he is increasing in the amount he eats so I think we are getting the hand of it.

The picture above was taking at Garets first Jacksonville Suns game. We were hanging out before the game and got this cute picture. We had a great time and Garet did a good job of watching the game. Daddy almost got us a foul ball that came right to us. I think he was just worried about it not hitting us so he did not concentrate on catching it. But we were so close to having a foul ball at our first game. Once Garets bed time his he was ready to go home. We could tell that he had a good time because that night was the first night that he slept all the way threw. He fell asleep at about 9:30 at the game and did not wake up till about 6 am. YEAH for mommy and daddy. He has not slept quite that long since but he is starting to put a little more time between his wake ups.

It is so much fun that he is starting to grow into a lot of the toys that we have around the house for him. The picture above is from is rain forest bounce thing. He really enjoys sitting up and this is a great way for him to sit up on his own and also with all the lights and sounds it can keep him happy for about the same time as it takes me to clean and sweep up around the house. It is perfect. Garet has also been doing a great job of sitting up and most recently he likes to stand all the time. We have been trying to do tummy time so that he will want to start crawling but I think that when he is on his tummy it puts extra pressure on his chest and heart and he does not like it at all. I have said it from the beginning that he was not going to do to much crawling, I think he will go almost straight to walking. I stood him up the other day and put his hands on the coffee table and he stood there on his own for about 2 seconds or so. Don't get me wrong we still have a long way to go before he is walking around the house but every little thing he does is exciting to us.
The picture above is Garet in the little wagon that my work gave me with flowers in it when I had Garet. Grandma Rose took this picture. I am glad that she remembered to do this. He is almost to bid for the wagon now.

Well I think that this is long enough so I will wish you all a great day and hope to be able to update a little more often. Thank you again for all the prayer. We would not be able to post all these happy pictures if it was not for all you keeping us in your thoughts and prayer.

Happy 4th of July

2009-07-07T09:45:00.001-07:00

Happy 4th of July to everyone from Garet. We made a trip down to Orlando to visit family that lives down there. It was nice to have Friday off of work so we could get down there a day earlier and have plenty of time to hang out and relax. Matt was able to play a round of golf on Friday. They had a great deal were they got to play as much golf and eat as many hot dogs as they wanted for a very good price. I know he was excited about being able to get out and play some gold. It has been a long time since he has been able to do that. Garet, Grandma Rose I got to relax and do some swimming.

The picture above is Garet sporting his new sunglasses. He did not mind them so much for about 5 minutes or so. I think if it was sunnier out he would have liked to have them on, but since it was about 10 in the morning that he went swimming there was not much sun on the pool at that time.
Above it a picture of Grandma Rose and Garet. Grandma Rose was helping him jump up out of the water and them splash a little in the water and Garet really enjoyed that. If you look close you can see a smile on his face.

We got to test out his new floaty toy for the pool. It was almost as big as the Jacuzzi part of the pool so he did not get to float around to much but we did get to see how he liked it. He is still a little bit to small for it. It is for 6 months and up so someone had to make sure to hold him up so he did not fall forward. It will not be much longer and he will be floating around all over Ganny's pool.

It was so nice to take a weekend and just get away. Matt and I got to go and see some fireworks on Saturday night. We did not take Garet because we did not know how he would react. We really wish that we would have since we sat far enough away that I don't think the noise would have bothered him.

Garet is doing so great with his eating and taking of his medicines. He is now up to 12 pounds and 1 ounce the last time that we took him into see the transplant doctors. That was a little bit over a week ago so I am sure that he has gained more since then. He is not out of all of his 0-3 month clothes. Most of his little outfits are right around 6 months in size. He is just getting so long that we have to go a little bit bigger so it does not ride up. Well that is all for right now. I should be getting copies of the pictures from the poker run, and as soon as I do get them I will post a bunch of them so you can all see them.

Thank you to everyone that has been donating money to help with medical bills. It has been such a big help and financial relief to not have to stress about were the money is going to come from to pay all the bills that are rolling in. Most of all thank you for the continued thoughts and prayers, they have been great and please keep them coming.

Thank you Thank you

2009-06-30T07:43:00.001-07:00

This past weekend we had a Poker run to raise money to help with Doctor bills and we had a great turn out. All the people that showed up were so awesome and supportive. We had about 40 or so bikers and about another 15 people in cars. When the ride ended at Whiteys fish camp we had so many family and friends that came our to show there support as well. We were able to raise right close to $1500. This will start to make a dent in the pile of medical bills that have started to come in. We also had great support from the businesses around town. We did a raffle drawing with items donated from all of them. I think we counted we had 50 different packets of items that we raffles off. We had everything from gift cards to t-shirt and flags and some really cool Harley Davidson items. Thank you so much to everyone that came out and helped. I am going to try to get some pictures up there in the next couple of days.

Update from the Doctors
We had another clinical visit yesterday at Shands. The doctor reading the Eco's said that he went back and took a look at all the old Eco's as well and can see some improvement in the walls and lining of the heart. The next couple of months are going to be very critical in his improvement. We have to make sure that he is getting enough calories for his body to continue to improve. They have taken away one dose of one of his diuril medicine. This is one of the three medicine that help to keep extra fluid off the body. So they must think he is doing well enough on his own to take away some of the help with that. All together things are looking pretty good we just need him to keep getting stronger and hope that the heart keeps working better. The next time we go back to the doctor is in about 2 1/2 weeks. Thank you so much to everyone for your thought and prayers, I do believe that God is hearing us loud and clear. Please keep them coming.

Big boy high chair

2009-06-25T06:57:00.000-07:00

Just in the past week or so Garet has decided that he does not like to sit in his rocky chair on the floor while we are eating. He wants to be up with us were he can see what is going on. So yesterday on our way home from work we stopped by Walmart and picked him up a high chair. He will be able to use this high chair for quite a while. It converts to a booster chair when he gets that big and the whole thing is either dishwasher safe or machine washable so yeah on the easy clean up. He thought he was so cool when we put him in the chair. He would not smile for me when I got the camera out. But as soon as I put the camper away he was full of smiles.

Garet and one of his puppies

2009-06-24T05:32:00.000-07:00

Garet and Ginger are buddies. Last night we decided to get a picture of Garet and Ginger. Ginger was sleeping so Matt decided to lay Garet next to her. At first she woke up and kind of looked at Matt and then at Garet and then just laid back down. She is such a good dog. Garet seemed to enjoy is since Ginger is so nice and soft. I think Ginger is the one of our dogs that we would be able to do this with. The other two just want to lick him all the time. I think they would get to excited if we tried to do this with them.

This week has been mostly a smooth week so far. Since we have changed the mixture of his formula we did not think he was eating as much as he should be. So we started to write down the amount he eats at each feeding like we were in the hospital. It looks like the amount he is eating is a little lower than when we first came home but it is still over what they want him to be getting each day. Since we are mixing more formula with less water I am sure that he is getting a lot more calories than he was when we first came home. We have got back to only getting up at 2:30 and 5 in the morning so that is working really well. When he gets up at 5 it is just the right time for us to get him fed and back to bed before we have to leave to go to work.

Garet is doing so well holding up his head, we no longer have to support his neck when holding him. He is also doing really well with sitting up. He no longer wants to be laying down all the time. It will not be much longer until he is sitting up on his own. He is getting so big and wanting to look at everything.

We have our next Doctors appointment on the 29th so we will see what comes of that appointment. We are going to talk to the doctors about maybe taking a little trip to visit some family down in Orlando. Since he is still on the transplant list we have to make sure that the doctors know where we are traveling in case something happens.

11 weeks and 2 days

2009-06-19T09:41:00.000-07:00

We have had two doctors appointments in the past two days. Wed we had a normal doctors appointment to get Garet his 2 month shots. Everyone was so excited to see him there. They had been keeping up with the hospital on how he was doing. His doctor said that he is looking really good. He got 2 shots in his little legs and one immunization that he had to take by mouth. He did not have any problem taking that one. He is starting to get use to some of the medicine. He is now 11 weeks old and weighs 11 pounds 9 ounces, and he is 23 1/2 inches long.

On Thursday we had his first Cardiologist clinic visit. Again a lot of the nurses and doctors were so excited to see him since had been discharged. They did an Echo and an EKG. Doctor Fricker (The main cardiologist) said that they did not see much change on either test. But one thing they could see was it looks like the lining and the walls of his heart are starting to get thicker. This is a very good thing. He also said since he is so young and he seems to be doing well with everything else he has a good chance for his hear to continue to get stronger. Since he is not crawling or walking or anything like that yet, his body is not demanding as much from his heart as a 1 or 2 years heart would. This is the only reason the doctor thinks that his heart might have a chance to continue improving. So we really want to see some large improvements here in the next couple of months before he starts to become more active. They have increased the dose of his medicine that is helping his heart to squeeze. the bigger he gets the more he will be able to handle of that. We have also increased the calories for his formula. they really want to make sure that he is getting as many calories in one day as he can. The next time we have to go in is the 29th. We thought at first that we were going to have to go in once a week. Doctor Fricker said that twice a month should be good right now. So those are our big updates. Things are staying stable and now we just have to keep taking steps to improve the function of his heart.

We hope to see any many of you as we can out at the Poker run for Garet on the 27th of this month. Matt and I will be there helping run things and at the end Grandma Rose will be bringing Garet up to Whiteys for a little while so everyone can see and meet him. Since it is so hot right now he will most likely not be up there to long, but I know he wants to see everyone and tell them thank you for all the prayers that have been coming his way.

Swimming

2009-06-17T04:45:00.000-07:00

Garet got to go swimming for the first time yesterday. We went over to Granny's house for dinner and decided to see how Garet liked the water. He love his bath time so swimming was nice as well. I think we waited till it was a little bit to late, because he was only in for about 3 minutes and started to get cold and had to get out.

He looked so cute in his little board shorts. Above is a picture of Garet and daddy getting ready to go swimming. Below is just a cute picture. Garet got some new sunglasses and a new hat yesterday as well. He did really well with the hat. He does not mind having something on his head. I think since we had his hat on him while he was in the hospital he is used to having a hat on his head. His sunglasses will take some getting used to. He did not try to take them off but they are a little bit big on his as of right now. He is just like his daddy in the way that he does not like the bright sun on his eyes. He seemed to like his sunglasses if they would have stayed over his eyes.

Well today we have our 2 month shots so I am sure that will be a lot of fun. It will be fun to see how much Garet weighs now and how long he is getting. Yeah I will have some new information to post. I feel like I have not been keeping everyone up to date as much lately but I guess there is just not as much going on as there was when I first started this page. That is a good thing that everything has slowed down. Well I will talk to you all tomorrow. Have a great day.

Getting into the groove

2009-06-16T04:33:00.000-07:00

I finally feel like we are getting into a groove at the house. All the medicines, combined with spacing out of the feedings. Making sure everything gets done, but also making sure we have enough time to spend as a family. Once we get home from work time flies. It seems like we just get home and it is time to put Garet to bed. We have had so much help from friends and family, I have no idea what we would do without it. Grandma Rose has been staying with us and is so much help. She has been taking care of dinner and taking care of Garet all day long. I really do not know what we are going to do when she has to go home. Overall things have been going pretty smooth. Even with all the medicine that we have to give it is really starting to feel like things are getting back to normal.

Thursday we have a dr visit over at Shands. They will most likely do a EKG and an ECO. Hopefully they will be able to tell us how the function of his heart is doing right there at the appointment. We are going to try to move around some of his medicines so there is not so many different times in the day that he has to take them. We are going to see what ones we can give at the same time. At first he was having a hard time taking to many at one time, but I think he is starting to get used to taking them. He is not happy about taking them all the time, but is doing good about getting it all down.

A couple of the medicines that he is taking make him pee a lot so we seem to be going threw more diapers then we had been. It is a very good thing that he is peeing so much so we will just have to buy the bigger box of diapers. His heart does not have to work so hard if there is less fluid in his body. So keep the pee coming.

It is hard to believe that in a couple weeks he will be 3 months old. He has changed so much in just the time that we have been home from the hospital. He no longer wants to lay down as much. He would rather be sitting in your lap or sitting up on the couch. He is smiling so much more now. When you talk to him you can see that he is trying to compute what you are saying. He is starting to do little laughs when he smiles, and I don't think it will be to much longer and he will be doing those cute belly laughs. It is so nice to see those smiles when you get home from work. Most days those smiles are what really keep you going. Overall things are going really well and we hope to have some new news to bring to you on Thursday.

Fund raiser for Garet

2009-06-12T10:21:00.000-07:00

Matts dad along with family and friends have used there time to put together nice fund raiser to for Garet. I am just starting to get all the information for this, but wanted to pass on the information that I do have. I think it is going to be a good time. Everyone can get together and have a fun day. Below is all the information from the flier that is being handed out. I think the way it works is that at each location listed below you get to draw a playing card and at the end location the person with the best hand gets a prize. I think they are also going to have moor door prizes and free food for dinner. Again I am just finding out all the information. If you have any question please let me know and I will get the answer if I do not know it. We hope to see as many of you our there to have a good time with us.

Poker Run for Baby Garet
Saturday June 27th
Registration from 10 am-11 am @ Ronnies
($15 Per Driver, $5 per passenger)
Run starts @ 11:30
Start: Ronnies (232 Walnut St, Green Cove Springs, FL 32043)
1st stop: Outback Crab Shack (8155 CR 13 north, St Augustine, FL 32092)
2nd stop: High Level Lounge (3821 Reid St, Palatka FL)
3rd stop: Tail Gaters off Hwy 17
Final Destination: Whiteys Fish Camp (2032 CR 220)
Last person to Whiteys by 5 pm for Prizes and a Free Fish Fry for all paying participants.
Any additional question please call 904-673-2122 or Whiteys 904-269-4198

Garet was born on April 1st of 2009
On May 7th he was admitted into the PICU at Shands Gainesville and diagnosed with Dilated Cardiomyopathy. He is currently on the transplant list, and may end up needing a heart transplant.
On June 9th Garet was allowed to come home with his family. He is on a list of medications to help him stay stable. He has weekly visit back to Shands to keep close tabs on his condition until they decide the next step that needs to be taken.
Additional information and weekly updates on Garet available at www.garethoward.blogspot.com

Garet is really enjoying being home. There have been quite a few times that he has not enjoyed taking his medicine but over all he is doing really well with everything going on. We go to the Doctors next Thursday were they will do another ECO to see how the function of the heart is doing. I am not sure if they will increase any of his meds or what they will tell us to do next. We are just so happy to have him home. Grandpa Sward came in town on Wednessday so Garet is having fun with Grandma and Grandpa for the next couple days, while mommy and daddy work during the day. He is still eating really well so that is good. We have to make sure that he gets enough calories to continue to grow. Thank you to everyone that has been sending us all the wonderful cards and gifts for Garet. He is starting to be able to play with some of his toys and really likes the bright colors.

WE ARE HOME!!!!!!!!!!!!!

2009-06-10T04:56:00.000-07:00

Yesterday was a very busy day. First thing in the morning at about 7, Garets nurse came in with his first set of meds for the day. Since we were planning on going home she was explaining everything about each med and if there were any other meds that had to be taken first and things like that. The doctors made there rounds and the main transplant nurse came in and told me that she has send all of his prescriptions down to the pharmacy in the hospital so we could make sure they had everything we needed to go home. Those were ready to be picked up right around 11. During the time that we were waiting , we got the room all packed up. It is amazing how much stuff you can accumulate in 4 weeks. It does not seem like that much when you are bringing it up one grocery bag at a time. But you sure find out how much stuff it is when you have to take it all down to the car. Thank goodness we had already gone over to the Ronald McDonald house the night before and got most of the stuff over there all packed. Matt took a full car load home Monday night when we went home. When I got back from picking up Garets meds his nurse was taking out his last pick line in his arm. Our baby is now fully wireless. The nurse went over all the meds and made sure we had everything that we needed before we could sign the discharge paper and go home. About 1:30 we were walking our of the hospital and getting into our car.

Once we got home it was time to eat and take some medicine. As soon as Garet ate he took a little nap. It was perfect timing since we had so much stuff that had to be put away. It was very nice to be home and have a home cooked meal. Our day ended with Garet going to sleep in his own bed and we were able to do the same. We will still be visiting Gainesville each week for a while. Every Thursday we have a clinic visit with the Cardiologist. Garets heart is still not working the way it should but he is stable on his meds and we just have to make sure that we keep the doses increasing as he grows. Right now it is up to God and Garet as to what will happen next. Our hope is that he continues to get stronger and stay stable.Hopefully we can improve this problem with medicine. He is still on the transplant list and that may still be a factor as time goes on. The longer he is on the list the better his chances are if he does need to get a heart. For now we just have to try to prevent any other kind of sickness. Cold and Flues will effect him so much worse than it would with a healthy baby. Now that we are home we would love for you all to come and visit. When you do come to visit please help us help Garet. Hand washing for anyone that comes around and constant sanitizing of everything around the house is so important. It is now our job to make sure that we stay as healthy as possible. In doing this we can keep him healthy as well so that his heart can get stronger. In the next week or so we will be taking a infant CPR coarse in Jacksonville. If anyone is interested in taking it with us to get there certification we would love for you to join us. I am not sure what day it will be on but I will keep you all posted or you can email me with the information.

Look how big I am getting. This is one of my favorite shirts. It says "little body BIG heart"

Looks like we are going home.

2009-06-08T11:49:00.000-07:00

Well it does not look like we will be going home Wednesday. It looks like we are going to be going home Tomorrow. My mom just called and said that the doctors came in and said that we can go home tomorrow. We have a busy day ahead of us, but very exciting. The hospital is going to send us home with a month worth of prescription for Garet and that way we do not have to worry about the pharmacy not having something once we get home. We also have to sign up to take a infant CPR class. Tonight we have to get everything over at the Ronald McDonald house all packed and cleaned up and also everything that we have brought to the hospital over the past weeks. I am sure they are going to have a lot of things that they have to show us before we can leave and I am not sure what all they are going to send us home with. They may send us home with a traveling heart monitor or something like that. If they do that I am sure we will have to learn how to work that as well. I will most likely not be able to post anything tomorrow but I will try to get to work a little early so I can do a post before I have to start working on Wednesday. Thank you so much for all the prayers and thought they have really been helping and now we get to go home. We can not wait to see you all.

Very nice weekend

2009-06-08T06:38:00.000-07:00

I took a little break from the blog page this weekend. I am sorry to those of you that have been checking it every day. Not much new happened over the weekend. Things are going nice and smooth right now. We had to change the time and amounts of medicine that Garet was getting at one time. They had him scheduled to get his medicine 2 times a day. Once in the morning and once right before bed. That was fine except they had him taking all 7 meds at once two different times a day. Well those times just happen to fall right near the time he was eating. His poor little tummy couple not hold a normal feeding plus all the different meds that he needed to take. We had a few time that everything came back up. This is when we had to talk to the nurse about spacing them out a little bit. I think we have it worked out now. He now takes half at one time and then the other half about an hour later. That seems to be working better. The nurse said that the times that he takes the meds is not as important as the fact that he takes it all and keeps it down.

We aredo not want to get to excited but it is hard not to. Right now it looks like we might be getting to go home on Wed some time. Things have been going well and the doctors are very impressed with how strong Garet has been. If we are lucky enough to go home on Wed we will still have to go back and forth to Gainesville at least once a week for a while. Since he will hopefully continue to grow at a fast pace, his meds will have to continually be adjusted. We are just so excited that they are even talking about us possible getting to go home. I will keep you all posted.

Good news Friday

2009-06-05T09:11:00.000-07:00

TGIF to everyone. It is funny to know that today is Friday again. Being back to work I can keep track of my days again. Well we got some good news from the doctors on this fine Friday. It looks like when they looked at the ECO yesterday that his function is not getting any worse. It may actually look a little better but they are still being cautious on that. They did say that it looks like his function is up around 29% and that is so close to the 30% that they told us would be some noticeable improvement. Last night was the first night that he did not have to have his pee medicine by IV. He has now taken all of his medicine by mouth two time. He really did not mind taking his medicine by mouth when he was only taking one or two. But now when they walk in our room at 9 at night with a ziplock bag full of meds it is not quite as good. They have him on 6 different meds for all sorts of different stuff. It us about a good 30 minutes to get him to take all of them. There are a couple that must taste good because he sucks those down. There are how ever a couple that must be just horrible. He makes the worse faces when he takes those. We normally get about half way threw his meds and then he decides that enough is enough and start to throw a fit. We just tell him how much better he is going to get if he keeps taking his medicine like a big boy. You know since he is 2 month old he understands everything that we tell him and just says ok mommy and daddy I will take all my medicine and not throw a fit. HAHAHAHA. He is so grown up already.

If he continues to do good taking his medicine and continues eating it looks like they are trying to shoot for middle of next week some time to try to come home. That will be so great to have him home and be able to start to function as a family again. They have not told us how often we are going to have to be back to the hospital for followup visits. I am sure at first it will be quite a bit. That is just fine with me. Well that is our happy Friday news. Thank you again for all the prayer and please keep them coming so we can get home and Garet can keep growing up big and strong.

No move IV meds

2009-06-04T12:15:00.000-07:00

Today Garet has officially been taken off all the IV meds. He is now talking all of his meds by mouth. I think right now they have him on 6 different kinds of medicine. All of them working together seem to be doing a good job of keeping him stable. I talked to grandma Rose earlier since I am back to work, and she said that Garet has a visit from some firemen. I guess some firemen come in about 1 a week to visit the kids in the pediatric unit. They stopped in Garets room today and gave him a fireman pillow. I can not wait to take pictures of Garet and his pillow to show you all. The also came in today and did an EKG and this afternoon they came in and did an ECO (ultra sound of the heart). SO hopefully tonight some time one of the doctors will come in and let us know if anything has changed. I know tonight some time after 8 I will be trying to find a doctor to ask about the ECO. We were told when we were in the PICU that they have to read all the ECO's each by 8 at night.

Garet is doing really well with his eating. He needs to eat at least 20 ounces a day in order to get enough nutrients to maintain his current weight. Anything over 20 is good and will help him to continue to grow. The past couple of days he has been eating right around 24 or more ounces. We are now back up over 10 pounds. 10.1 pounds as of Tuesday, so we are steadily gaining weight and that is very good. I am also going to see if they will weight him tonight or in the morning so we can see how much he has gained in the past 2 days. Right now a healthy baby should be gaining an ounce a day until they hit three months and then they should slow down a little bit and be gaining a 1/2 ounce each day. That is what I have found online as a guide line. If we can stay close to those stats then that shows real growth. I don't think we will have any problem doing that. As long as he does not over eat he does not have any problems keeping his food down.

I know I have been trying to keep you all up to date on how Garet is doing but I have a hard time explaining exactly what is going on with his hear, so I found a great web site that does a great job of explaining his condition. I wanted to share that with you all. http://www.childrenscardiomyopathy.org/ is a website that will answer more questions that maybe I have not been able to answer. The condition that he has is called Pediatric Dilated Cardiomyopathy. It is a chronic heart issue and right now there is not cure for it just ways that they can help you to live with it. Please take a look if you have any questions or just want to know a little more about what is going on.

Thank you again for all the thought and prayers. It looks like Matts dad is helping to put together a bike ride here in the surrounding Jacksonville area to help with financial support. As soon as I find out more information on it I will let you all know. I believe that they are trying to plan it for some time at the end of this month. I don't think you necessarily have to have a motorcycle to participate. I think they are going to travel in between a few different places here in town and then have things going on at those places as well. So for those of us that do not have a bike, we can just go to one of the locations that they will be traveling to and have some fun there. Like I said as soon as I know anything more I will let you all know.

We got our wagon ride

2009-06-04T04:51:00.000-07:00

We finally got our wagon ride. On Tuesday they were talking about moving us to a different floor or there was even talk about moving us back to Wolfsons hospital.We wanted to make sure before we got moved that Garet got his wagon ride. We could not find any wagons on our floor so I had to go and find one on another floor. After sanitizing it and getting blanket put in the bottom we were ready for the ride. At first Garet was not so sure what was going on, but as soon as we started to move he thought it was to cool. One of our favorite nurses (Trisha) made sure we had everything we needed. She got Garet hooked up to a portable heart monitor and off we went. Trisha was our driver and she did a very good job. We did about 3 laps around the PICU. On the first 2 laps he was smiling at everyone we would pass. By the middle of lap 3 he was fast asleep.
We really have to make sure that once we get home we get Garet a wagon. He will be able to help daddy in the yard in his wagon. He really seems to like it and that would be a fun way to get him around the yard. We will have to make sure it has some big wheels since out yard and road are mostly dirt.

Onto our move. Like I said above they were looking at moving us to another floor or maybe even back over to Wolfsons. Well we made sure they knew we wanted to stay at Shands. We felt that Garet will continue to get the best care if we stay at Shands. All the doctors know him and it did not make much sense to us to go back to Wolfsons. So we have now moved to the 4th floor. We will miss all of the friends we have made in the PICU, but we are very happy to still be at Shands. It is a step down room and hopefully our final step before getting to go home. It is hard to go from all the personal care that Garet was getting in the PICU to a normal Pediatric floor. He is still getting wonderful care we just don't see the nurses as much so we do not have that close relationship with them that we have with the nurses up in the PICU. The main Cardiologist was wanting Garet to have his own room in the ped unit but there is only 4 rooms that are private on that floor and from the sound of it they do not open up very often. No big deal. We have a little girls for a room mate. She is also a transplant patient. So they both have the same precautions that the doctors and nurses have to take. The doctors are suppose to meet some time today and try to put together a action plan and time line on how much longer we will have to be at the hospital. Please continue with all of your prayers, we would really like to be home some time in the next couple of weeks. If they could send up home with a portable heart monitor then we could be doing the same thing at home that we are doing at the hospital right now. He is doing a great job of taking all of his medicine. He is such a big boy when it comes to that. There is only one more med that they have to start having him take by mouth and that is the one that makes him pee a lot. They are still changing the doses a little bit on some of the other meds, trying to find the exact amount that will work best for his little body. Well as soon as we hear anything about when we might get to come home you all will be the first to know.

2 months old

2009-06-02T04:33:00.000-07:00

Yesterday was Garets 2 month birthday. He had a really good day. He ate the most in one day than he has so far and I think he slept the most since he got off all the meds. It looks like they are going to try to transfer us to the 4th floor. That is the normal pediatric unit. They have some beds that are called step down beds. IMC bed (Inter medial Care Unit) They say that he is doing well but not well enough to go home yet. A couple of our favorite nurses found out they were trying to transfer us and they said that they think we should just stay on this floor until we can go home. I tend to agree with them. We have got to know so many of the nurses and some of the other patients on this floor that we would much rather stay here till we get to go home. If we get moved to the 4th floor we will have to get used to a entire new group of people. I am sure they are just as nice but we like it on the 10th floor.

Yesterday we were trying to find one of the hospital wagons so that Garet could go for a ride around the 10th floor but we could not find one up here. Today I am on a mission to find a wagon. We may have to get one from another floor and get it all sanitized before we can use it but that is our goal for today. I thought it would be nice for Garet to take a ride on his 2 month birthday but it will have to do being 2 months and 1 day.

They have not done any more EKG's in the past couple of days and they have also not done any x-rays of his chest. I guess that is good. They feel that he is doing well enough that they do not have to have that every day check. So overall things are going really well. Garet is doing so well and is working on getting himself better. We still have a long while before we can say that he will not have to have a heart transplant but we are moving in the right direction. Thank you so much for all the thoughts and prayers. As you can tell the power of God is so strong. A bible verse that comes to mind is. Were 2 or more are gathered in my name I am there. We have so many people that are coming together to pray for Garet that we know he can hear our prayers. Thank you again. It means so much to us that so many people are following Garets story. We are working on the happy ending.

We love our Grandmas

2009-05-31T05:48:00.000-07:00

It is so exciting that we are finally getting to move freely with our Garet. Both grandmas have had a chance to hold Garet now. It is like getting to hold him for the first time all over again.

The picture above is of Garet and Grandma Rose. The picture below is Garet and his Granny.

We still have a lot of people that are excited about holding Garet again for the first time.

Ok now to the updates. We have been getting so excited about all the holding going on that I have to make sure I update everyone of how Garet is progressing. His left lung is now back to normal and they have stopped doing the morning x-rays and EKG's. They are continuing to give him his meds by mouth and he is now off of all the IV's. He can be wireless now if we want to every once in a while. The only thing that he is hooked up to is the heart monitor and the Oxygen sensor on his foot. We just continue to wait and see what he decides to do on his own. It is looking good that we may be able to go home some time soon. We have not heard a date for going home yet. Everything they show us and tell us they are saying when you get home do it this way. When you get home do it that way. So that makes us think that it may be coming soon.

Even less wires

2009-05-30T12:31:00.001-07:00

We are a champion burper now. Garet has been eating about 4 ounces at most of his feedings. Since he is eating so much at one time now we really have to make sure that we burp him well or everything he eats comes back up at the end of the feeding. Below shows grandma Rose burping the big man. He is doing a really good job of holding his head up on his own. He just needs some help sitting up. He is getting so big so fast. Garet has decided that he does not like to have his blanket on him very much anymore so we have started to put some little clothes on him so he only has to have his blanket on his legs. We took some of his onsies and cut the bottom snap part off so that it is just a long shirt. We had a little white hospital one on him but it was so short that it really just covered his chest and his belly hung out the bottom.

The doctors are saying that his lung seems to be getting better. The last couple of x-rays that they have done show that he has some good air flow threw both lungs. His heart on the other hand is still not doing so well. The pumping function is still in the non measurable area, but they are saying that it is in the higher part of the unmeasurable. It is confusing. To me it sounds like it is some what measurable. We want his pumping to be up around 70. Anything under 30 is considered unmeasurable. When we cam in is was consistently below 20. Now the past couple have started to show a little improvement and it sounds like he is staying in the low 20's right now. Once he gets up in the 30's then they will consider that improvement. But the doctors say that we should not go by the numbers alone. The fact that he is eating and is pink and is staying awake a lot is much better to look at than any number a machine can pop out for us. Right now we just need him to keep eating and growing. The doctors say that as long as he keeps growing then we will continue to look up. He is measuring 22 1/2 inches long and weights right close to 9.5 pounds. Since he is eating so well and seems to be gaining weight our status on the transplant list has moved down. That is good because it means that he is not in the critical stage of we need a heart right now. Everything right now is looking good. He is now down to only 2 IV drips. The only part of him that has things hanging off is his left foot. His arms and right leg are free to move as they please.

I know that most of you know who we are. But there are a lot of people that we are hearing from all over the place that we have never met. Above it our most recent family picture. We want to make sure that everyone knows how much we really appreciate all the prayers that have been coming our way. It has really helped with Garets health and with keeping our attitude positive. Everyone that has helped us in any other way we thank you so much as well. There are to many of you to name but thank you to everyone. We hope to have more good news to come. Our hope is that we get to take Garet home some time soon and continue to get him better from the house.

2009-05-29T07:39:00.000-07:00

Good morning to all

I was not able to post yesterday. I am sure you all know that. I made a trip home to get clothes for work. I also was able to get some stuff done around the house that really needed to be done. So I have some catching up to do today. Below is a picture of Garet and Daddy. They had so much fun sitting there playing with each other. It really feels like he is starting to get better since we can hold him. Yesterday while I was in town and daddy was working Grandma Rose got to hold and rock Garet during the day. Now that he knows he can get out of bed he can really throw a fit trying to get us to get him out of bed. I don't blame him though. Being in bed all day long is no fun. We try to take him out as much as we can but not get him to stirred up.

Yesterday when I got back to the hospital Garet had a nice clean face. They had taken out the feeding tube. Since it has been a few days now since we started to bottle feed him they thought it would be safe to take if out. They also had him on room air instead of Oxygen. So he does not have to have anything breathing assistance at all right now. He has been off the Oxygen for about 18 hours now. We are very hopeful that he will not have to go back on the Oxygen. Below is a picture of his clean face and his little body with a lot less wires and tubes everywhere. They now have him on three medicines that he is taking by mouth. Instead of the 13+ IV's that he was on at the beginning, he is now only on 3 IV meds. They are hoping to have him down to only 2 here in the next couple days.

He is now only hooked to very few machine and most of them are just for monitoring things not for assistance. He is now down to being hooked up to the heart monitor, two different IV lines one in his right arm and one in his left leg, the blood pressure cuff (They take this off every once in a while to give him a break),thermometer line that is on the bottom of his right foot, and a Oxygen sensor that is on his right foot. Below is one of the first pictures that we took after they got him all hooked up to everything. I know most of you have seen this but I just wanted to show you how much better he is looking now. All the prayers that everyone has been sending are really doing so much for him.

We have a new favorite toy. We are not able to have any flowers or plant in the PICU so Grandma bought a balloon. He loved to look at it and laughed when it would move. I thought I would see if he would hold it and for sure he would. He is learning when he moves his arm the balloon moves. He will sit there and play with his balloon for as long as his little hand will hold it. He has not learned how to put the string in his mouth so he is good to play as long as he wants to right now.

Lots of things today

2009-05-27T10:41:00.001-07:00

We met a new nurse today, her name is Paula and she is so nice. You will notice in the picture below that a few things are missing. First of all they took the big sticker thing on our head off. Yeah we can see our entire Garet face. Also on his left arm he had a big IV line it almost looked like a little cast on his arm. With that on he could not use his left arm since they had to have it restrained to the bed. Well they took that off this morning as well. So now both of our arms are free. That makes Garet very happy but that means that anything that is on his body has to be taped down because he knows that if he pulls on it they will come off. That is why he has the big pieces of tape on his face. He has learned how to pull the little air thing on his nose and get it out.

The next exciting thing is that I got to hold Garet and feed him a bottle. We have been able to feed him now for the past day or so, but this is the first time since we were admitted to the PICU at Wolfsens that I have been able to hold our little man. He is off enough IV's and off enough of the other machines that we were able to unhook him and pick him up and move to a chair for about an hour. It was so nice. I have been trying to put the cutest pictures on here to show you all how happy he can be. Today he had a big feeding and needed to burp, but he did not think it was such a good idea. So below is one of his mad pouty faces. He was telling me threw his eyes that he did not like what we were doing. So right now we just wait some more and see how Garets heart and body do while they continue to take him off more of the different medicines. We also have to see how he does taking the medicine by mouth. Whey we took him out of bed to hold him the weighed him. He is 9.5 pounds. He has only lost one half of a pound since he has been in here. So now we are working on getting the weight back on him. He really loves to eat so I don't think we will have any trouble doing that. Thank you all for the prayers that you have been sending our way, it seems that they are all helping a lot. We are still not out of the woods yet but it is nice to see him getting a little better. His heart is still having a hard time but they are working on helping that with medicine. We are still praying that we do not have to have a heart transplant, but that is still a very real possibility. Only time will tell what will happen next.

We love our food

2009-05-26T08:29:00.001-07:00

We have now been able to eat out of the bottle for the past 4 or 5 feeding. We are eating about 2 ounces every 2 to 3 hours. We would probable eat more if they would let us but our tummy has to get used to having that much food in it at one time.
Today we signed the papers to get him put on the transplant list. This does not mean that we will have to have one but the longer you are on the list the better our chances of getting a good match. They have also told us that if he does need a new heart they will try to maintain his little heart as long as they can with medicine to try to get him as old as we can before doing the transplant. The older he is the easier it will be to find him a heart. The bigger and stronger he is means that he can take a bigger heart if one come up. Right now with his size he could take up to about a 1 year old heart. So if we can maintain him with medicine for a couple more months then he will be able to take a even bigger heart if he needs to. This morning they started to give Garet a couple of his medicines by mouth instead of my IV's. Since he is keeping food down and not having to struggle to much to do so. The next step is to get as much of the medicine by mouth the better. They start to do this so if there is a chance that we can go home while waiting for a new heart if we need one then we can. We have also had some nice big full diapers which is good as well. I know you all wanted to know about the poo.

Daddy had to go back to work today since the rain has let up. It is hard to not have him here with us all day. We know it is hard on him as well having to be at work while we are here. I have to go back to work in a week or so. I know I will have a hard time as well going back to work but some of our normal life has to go on while we are going threw this. We are very lucky to have Grandma Rose here in town so Mommy and Daddy can go back to work and there is still someone here to sit with Garet. We have had a wonderful family support threw all of this. Ganny Babs is making sure that we are all fed well to keep our energy. Everyone has been so great is helping in any way they can. Thank you so much to everyone.

The doctors say that the left lung still looks a little flat but there is some air moving threw it and there is no fluid on the lung so we just have to keep his left side up as much as we can. Garets heart is still not pumping very well but they are able to get it under some control with medicine. It is still not any were close to what it needs to be but we will take that right now. He will have to be on this medicine for a long time. That is one of the medicines they are starting to give by mouth. If they can get him to start taking his medicine threw his mouth and we can get rid of all of the IV's then we will able to hold him. He may also be able to sit in his swing and bouncy seat. Well it has been a good couple of days. We really hope and pray that we continue to have these good days and then number of bad or scary days keeps going down.

We just want to be outside

2009-05-25T13:46:00.000-07:00

It has not been bad being inside since it has been raining for the past week. Now today it is so nice outside. It is so hard to sit inside the hospital and just look out the window. We just want to pick up our little Garet and load up the stroller and go out for a walk. We can tell that it is hard for Garet as well. He loves to be outside and now all he can do is just lay in hi s bed.

Well not much has changed in the past couple of days. We are thankful that he seems to be doing ok. They have been working on the collages lung a little bit more. It must be getting a little bit better since they are not putting him back on the ventilator. He has been full of smiles when he is awake. I think if he was not all hooked up that he might have rolled over on his own already. There are times that he gets mad and almost rolls over with everything hooked up to him. I can not wait till we can start to work with him on sitting up and crawling and then even walking.

I hope everyone is having a good Memorial day. Eat a hamburger for us. Granny was so nice and brought in food for us and the entire nursing staff that had to work today. So we did get to have a hamburger and some ribs. It was a great Memorial day dinner. We just had to close out eyes and pretend that we were outside at the pool. But don't you worry we will be out at the pool before you know it. Garet has his swimming trunk in his diaper bag here with us. Grandma Rose bought them for him, so we are all ready to do some swimming. We will invite you all to come swimming with us when we get out of here. You all be ready.

Our little fits

2009-05-24T12:12:00.000-07:00

The past day or so it has been a battle to see what kind of breathing assistance is best for our little Garet. They took him off the ventilator on Friday and put him on just oxygen threw a little nose piece. Then they found out that his left lung has partially collapsed so they put him on a CAP or CPAP or something like that. He did not mind that to much. Then they decided that the CPAP machine they had him was not strong enough for how much he weighed so they put him on a bigger machine. Doing that they had to change the thing that went over his nose. They had to switch it to a piece that went in his nose to help get the air into his lungs better. Well he did not like that one at all. Mostly he did not like that one because he could not see anything with it on. He had two big plastic tubes on both sides of his head and big rubber things up his nose. So any time he was awake he would throw one of his fits. Well that would cause his blood pressure to go up and his heart rate to stay elevated. So they only left him on that over night trying to get his lung to puff back up. Now they have put him back on just the oxygen with the small nose piece. He is much happier with that on and it is keeping his heart rate a little lower. His lung is still not as good as they would like to see it but they are more worried about the heart rate and making the heart work to hard. They come in about every 2 hours and thump on the left side of his body with a plastic little mallet. It sounds really bad but does not hurt him. It is used to try to break up any fluid in the lung and try to get it out. Having the big nose thing in over night must have helped with the collapsed lung or they would not have put him back on the little oxygen.

I hope you were all able to follow all of that. Basically on Friday they took him off the ventilator and put the little nose piece in. The for the next couple days they made him mad and now his back on the little nose piece. I guess that would have been the easiest way to tell you. If his oxygen levels stay up and his lung gets a little bit better than tomorrow we should be able to start bottle feeding him again. Right now they are feeding him formula threw an IV. So at least his tummy gets to feel full.

We hope everyone is having a good holiday weekend. It is amazing how a college town gets very slow on a holiday weekend. We went to get breakfast and there was no one on the road. It was nice. Normally when we take the elevator down to the lobby we have to stop at about every level to let people on. This morning we made it clear from the 10th floor to the lobby with no stops.

Thank you so everyone who has came to visit and called to see how everything is going. We are hanging in there and trying to stay positive.

2009-05-23T09:11:00.000-07:00

We were so excited to be off the ventilator. We had a lot of smiles for everyone that came in the room. We did pretty good over night. I was able to feed Garet a couple time last night. They just had him on some pedialite to see how his tummy would do. He was doing about the same as when we were at home. He would eat about an ounce and then fall asleep. That is just showing that his little heart muscle is still having to work so hard to do anything extra. So this morning around 4 they came in to do there normal daily chest ex ray and they found that his left lung was partially collapsed. This is partially from the way he was laying and partially from the size of his heart pushing on this lungs. So when they found this out they made the decision to put him a CAP. This is what he has on in the picture below. It is just a piece that goes over his nose and blows constant air into his nose to try to help keep air in his lungs and keep it from collapsing completely. Garet does not like it at all. He was loving having the tube out of his throat and now he has this tube right in front of his face instead. But we will do whatever we need to to keep him breathing on his own. The plan for today is to try to get him back off the CAP and just with the little nose thing. They are not changing any of his heart medicine today. They are going to try to take care of this lung issue before they try to aggravate him any more.

Matt went to Vystar yesterday to set up the donation account. We have had family and friends ask us how they can donate to help out with hospital bills. So we Finlay got this done. We have two different way you can donate. You can call 1-904-777-6000 or go into a vystar. All you have to tell them is that you want to deposit to the Garet Howard donation account. We also have the donation button on the right side of this page that you can click on and do a donation that way. Please do not feel you have to do any of this. We are just setting it up for the people that are asking. The thought and prayers are all we really need. When we are all finished with this fun new part of our lives, if there is any additional money still left in either of these accounts we will be giving it as a donation to some sort of heart foundation. We want to make sure that anyone else that has to go threw this can get the wonderful help that we have been receiving.

Garets fan club

2009-05-22T09:07:00.000-07:00

We know that Garet has a lot of family and friends out there that are pulling for him but I thought I would show you some of his hospital friends. These are three of his friends that sit at the bottom of his bead and keep him company all day long. Some times they sing to him and sometimes they just sit and make sure the nurses and doctors are doing there job. We know the doctors and nurses are doing a great job but these friends just keep them on there toes.

Garet does have one toy that he loves so much. Our new friend Trish one of Garets nurses found this toy for him. It plays music and has flashing lights. He love to watch the lights flash and I think the music really helps to calm him down.
They were able to take the breathing tube out this morning and he seems to be holding stable. His chest is still moving more than it is suppose to but that is just because of the size of his heart. Garet seems to be a little more comfortable with out the tube down his throat. They do have everything ready if they have to put it back but as of right now we are doing ok with out the tube. We sounds so pitiful when he tries to cry. His throat is very sore and rough so not much sound comes out when he tries to cry but you can see it on his face.
They are giving him methadone every 12 hours to help with the withdraws from the narcotics that they have had him on for the past week. It only takes a few days for there little bodies to get addicted to the narcotics. They will slowly be decreasing the amount of methadone that he gets until he is not getting it any more. We are still not out of the woods yet, depending on if his heart starts to mend itself or not will depend on if we have to get on the transplant list. Right now all we can do is pray and leave it up to God to do what he feels is best for our little man. I know I say it at the end of each of my post but thank you so much for all the thoughts and prayers please keep them coming.

Take a deep Breath

2009-05-22T05:54:00.000-07:00

Good morning

This morning we are working on taking him off the breathing tube. Over the night they have slowly decreases to drip of sedation medicine so that he is as awake as they can have him. They just came in and turned the ventilator down as low as it can go to see how he breathes of his own with the tube. So I am not sure how many more steps there are to taking the tube out but it sounds like we are on our way to getting that tube out. They are still saying that his heart is about the same. If there is any change it is not measurable at this time.

I just got done talking with the nurse and asking he why they are trying to take the tube out. She said that if they take the tube out and his heart gets worse then we will have to go to put it back in and go to transplant. If they take him off and he stays the same again most likely transplant. If they take him off and he gets better then it could be something he just keeps getting better. Most of the Doctors including the head transplant doctor have looked at everything and seem to think that we will most likely be heading to transplant. He is not on the list yet but taking the breathing tube out and seeing how his heart reacts is going to help them get him on the list if that is what we have to do.

Thank you for your thoughts and prays, it could be a tough day today and we need all the support we can.

Hurry up and wait

2009-05-21T16:06:00.000-07:00

The doctor just came in to talk to us about the Catheter test that they just did. It was kind of a good news bad news kind of thing. They were unable to find any abnormalities in the heart that they can go in and fix. So we are pretty much at the same place a we were before. We now have to wait and see what his little body wants to do. We are now playing an even longer waiting game. We have to wait and see if his heart starts to get better over time or if he gets worse than we start to strongly look at the transplant option. So I guess we got some answers in one way but now we have to wait again. The genetic tests should be back in a couple weeks and maybe that will shed some more light on the subject. Other than those tests it is completely up to God to give us the answers.

Last night was a rough night. He decided that he did not want to go to sleep. At about 12:00 he decided that he was going to throw one of his fits. Finally by about 2 in the morning we were able to lay down and get a little bit of sleep.

Tomorrow is sounds like they may try to remove his breathing tube and see how we do without that. Since he has been so awake the past couple of days they seem to think that he will be less agitated if they take out the breathing tube. I am really not sure what to think about that. He has been doing a lot of his breathing on his own with just a little bit of assistance from the ventilator. Since we put him on it voluntarily to give his heart a break I am sure he will be good when they take him off but it is just a little scary. Now we are not for sure that this will happen tomorrow but that is what we are hearing.

Well I wish I had more to tell after the test today, but that is all that I have for right now. I will talk to you all again in the morning.

Tomorrow is almost here

2009-05-20T17:21:00.000-07:00

Today has been a pretty good day. We had a couple time that Garet got a little mad at us. When I was getting ready to leave to take a shower this morning he decided that he was going to throw one of his little fits. I thought it would be to get his heart rate up to the 180's. That is the highest it has been in a quite a few days. It did not take to long for him to settle down. When he has a little fit like that he gets very tiered after he is done and goes to sleep shortly there after.

We had the two doctors in today that are going to do the Cardio Catheter tomorrow. They had us sign release papers and also went over everything they were going to be doing. It is good to hear that we will get a some sort of answer but it can be very scary when they talk about the risks that are involved with this test. There are just so many things that can go wrong with any procedure. It is hard to have the trust that we have to have in these doctors. Our little mans life is in there and Gods hands.

We are number two on the list for the procedure tomorrow. So they will most likely be up to our room some time between 8 and 11 to take him down and get him ready. They have told us to expect his to be down there for around 3 to 4 hours. The procedure only takes about 30 minutes but the time it takes to get him down to the correct floor and get him prepped and get Anastasia going takes a while. Then when they are all done they have to make sure that he comes our the Anastasia good before sending him back to his room and also make sure he is good and stable before moving him again. So I hope by about dinner time at the latest we should hear something. As soon as I do and have a chance to absorb it all I will get on and update you all.

I look forward to hopefully bring you all good news tomorrow or at least some sort of answers. Thank you to everyone that is following our little man and keeping him in your thought and prayers. We love you all.

Yeah for poo poo

2009-05-20T04:28:00.000-07:00

Good morning to all

We have been waiting the past night and day for Garet to give us a little bit of poo. They told us that as soon as he does that they can start to give a little bit more food type IV's. Well last night right as I was getting ready to go to bed we found poo. I don't think I have ever seen so many people so excited about a little ones poo. The nurse was excited that he did it on her shift and the dr on last night even came buy to say that she was happy we got poo. They thought about starting him on the food stuff last night but decided to not change anything in the middle of the night. They are going to start it some time this morning. I am sure this well make him grow even faster than he already is.

As for his heart they are not seeing any change as of right now. That is a good thing that it is not getting worse and they said right now if it was to get a little bit better they might not see that right away since it is so bad. Sorry I can not update on his heart more than that. Until we have the catheter test on Thursday I don't think they are going to be able to tell us anything that they have not already told us.

It is still raining here and it looks like it will be for the rest of the week. That is a good thing right now so Matt does not have to work. It is also good because we do not have the time right now at home to water the plants that Matt had just planted. God is really helping us out in many ways. He really is an awesome God. He is not only watching over us he is taking care of our plants. Matt went home last night to give our dogs another night inside. With all the rain they are a little messy, ok a lot messy. All three of the dogs like to play out in the rain. Most of our yard were they like to play is dirt or mud in the rain. At least they are having fun as well.

One more day of waiting and hopefully we will have some good answers to pass on to everyone. Thank you again and again for all your thoughts and prayers. We really have a great group of people that are supporting us and all the prayers are felt and are very appreciated. We love you all and hope to be able to see you all soon.

Ready for night time.

2009-05-19T16:05:00.000-07:00

Today was a nice calm day. We are hoping that tonight will stay the same. He has slept a lot of today and that is good for his heart. The nurses are telling us that they are doing basically the same thing each day now just to keep him stable. We are for sure on the books for the Cardio Catheter test on Thursday. Once they are done with that test they should be able to come to our room right after and tell us what they have found.

The above picture is one that Garets Great Grandma took the other day while she was here visiting. He was wide awake looking around at everything. He really likes to be awake but the doctors and nurses do not like it quite so much. Matt is going to bring a cd player tomorrow and some of his cds that people have bought for him. He is also going to bring a bunch on his books that we were reading at the house. He really likes it when we read to him. Maybe that will help him to keep him calm and happy when he is awake. That way they will not have to use so much of the sedation medication.
Some of the nurses here seem to think that Garet needs a little girl friend. There is a cute little girl on the other side of our floor that is also a heart patent and I think they said that she is 5 weeks old. They cam in last night and said that they would be to cute together. I am not sure about a girl friend at this age but it should would be nice to keep in contact and have them be good friends and be able to relate to one another as they grow up. As we stay here longer and longer and get to know some of the other parents in here you do start to feel like they are an extended family. The nurses also become a very important part of your life and you look forward to seeing them. You hope that they are going to be the ones taking care of you little one

We do miss all of our family and friends and can not wait till we are back home and able to come and visit with everyone.

Its morning again

2009-05-19T06:06:00.000-07:00

It is a pretty nasty day here today in Gainsville. It is rainy and kind of gray outside. But we are still staying stable inside and trying to stay posative. Today they are not trying much of anything we. They are going to slowly take Garet off of the medacine that is helping him pee and see if his little body will contiue to pee without the assistance of that medacine. They are also going to start to give him a little more food. Right now they just have him on some of the basic nutirents that he needs and also still the protien.

We are still on the schedule now for the Cardio Cathetor on Thursday and we have hoping that that will be first thing in the morning. This procedure is what we are going to be looking to for answers. Right now it is the only thing that any of the doctors think will give us a little bit more information on what our corrective action will be.

A lot of the poeple from the transplant end of things have been in and out talking with us. They have been doing a great job in letting us know what may happen and making sure we have all the paper work in order so we can move fast if we have to the way of transplant. It also looks like they are planning for us to be here for quite a while. We kind of already knew that but now they are talking to us about more long term living arangments here in Gainsville. I guess after we are here for a while the Ronald McDonald house will have to leave for a couple days and you have to get back on the list to get back in there. So our social worker is looking at other option we may have. I guess they have a coupld apartments here in town and we can apply for grants that will assist in the payment for that and in those cases we can stay there form up to 6 months if needed.

There is just so much paperwork that we are having to do. For both medical and other. I feel like I should get a stamp made with my signature on it for all the stuff that needs to be signed. I am just joking of course but it would be nice. Well we have more doctors coming in so I will be back later.

Plans have changed for tomorrow

2009-05-18T19:24:00.000-07:00

Well we were suppose to be going in to the Cardio Cath first thing in the morning and then they changed it so they were going to go an MRI instead and then they came back in and said that they changed there mind back to wanting to do the cardio cath but then they had lost there place in line so now we have to wait to do it till Thursday instead of having it done tomorrow. I with they would have made up there mind before the canceled the first apt. Now instead of having a chance to get answers tomorrow we have to wait till Thursday, and that is if they don't change that again. I know they are trying to do what is best and the reason the thought the MRI would be better is it is less invasive procedure. But I guess they can find out more with the Cardio Cath so I really do not know what to think right now.

They do feel that he is staying stable enough that they are going to try to feed him threw his IV more than just the nutrients and potassium that they have been giving him. In order for them to be able to do that he has to do a little poo poo for us. So we are waiting for him to do that.

Today we met with the lady that does all the paper work in order to get us on the transplant list if we have to go that wrought. We are still hoping that is does not come to that but they want to be on the ball in case we do. There are so many blood tests and paper work that has to be done before they can even start to consider putting him on a transplant list.

He is for sure getting his days and nights mixed up. It is now almost 11 pm and he is so awake and looking around. We will have to work on that before we leave the hospital. I will stay up all night long if I have to just to have him home with us.

Matt had to go home tonight so that he could get up early to go to work tomorow. It is hard to think that we still have to do our normal day stuff with all of this going on. I still have 2 weeks left before I have to go to work. I am going to be able to work out of the office that is only about 5 or 6 miles away from the hospital in case I have to run over here. I feel very greatful that I have the option to be able to do that. Well I will chat some more tomorow but for now it is bed time.

More and more tests

2009-05-18T16:08:00.000-07:00

May 18th, 2009 @ 5:50pm

Today we thought was going to be a quiet day, but we have had quite a few different people in and out all day long. First thing this morning they came in and did his daily chest x-rays. Then just a little bit ago they came in and did a E K G and then they did an Eco or ultra sounds of his heart. We thought we were going to be going in and doing a cardio catheter tomorrow were they insert a catheter and go into the heard to check it out that way. But now they have decided that the are going to do a chest MRI first thing in the morning. It does sound like we should start to get some sort of answers here in the next couple days. They still may not be able to tell us why this happened but they will be able to start telling us what we are going to have to do to fix it. That is the most important thing to us right now.

Here is a picture of most of his Iv's they have running to him. Now keep in mind they are not all running at the same time. I feel like when we are all done here we will be able to be a nurse if needed. You learn so much in such a sort time.

They did give him a little sponge bath today and replaced a lot of the wires and things like that running to him. He loves his baths so he was happy when they took some of the wires off of him and he could move around a little bit more that he had been able to. Even though we have only been here about a week he is starting to look so much bigger. I know when they are first born they grow quickly but when you can not hold them they seem to grow even faster. Well he is taking a little nap right now so I am going to try to catch a little map myself. Thank you to everyone that has been sending there prayers our way they really seem to be working.

Smooth night

2009-05-18T15:55:00.000-07:00

May 18th, 2009 @ 1:32 pm

We got a call yesterday about 4pm from the Ronald McDonald house letting us know that they had a room ready for us. It is a nice place that we can call home as long as we are here. Matt and I tried to sleep over there lasts night but I had a hard time getting to sleep, so we ended up back in Garets room for the night. I just don't think I am ready yet to sleep away from him. It is nice to have a place to go and take a shower that is only for you.

So last night went pretty smooth. There was a little while where his Blood Pressure was a little low but they got that under control. The x-ray people came in again at about 3 am but they were a lot quieter this morning than they were the other morning.

We have had great nurses so far and really appreciate everything they are doing for our little man and for us. Today they are not changing much of what they are going to do. We are just going to keep him on the same meds that he has been on and keep him calm and stable. It is so important right now that we not make his heart work any harder than it already has to. It is so hard when he starts to squirm around because we know that he just wants to go outside and see the sun light. They tend to keep his room on the dark side so he does not wake up as much. I have a feeling once we get home he will have his days and nights mixed up. He seems to be more awake at night time than during the day. Well I guess now I am just rambling so I will say good bye for right now, but I am sure I will be back to give more updates soon.

Our new room

2009-05-18T15:45:00.000-07:00

May 17th 2009 @ 11:46am

So last night at about 6:30 pm we got moved to a different room. The room that we have been moved to has the capability of a process called ECMO. This process is a machine that can support the heart if it decides to go into full failure. The ECMO machine pumps the blood out of the body and puts oxygen into the blood and then pumps it back into the body. They are not saying that we will have to do this but there are only 2 rooms on the entire floor that have the capability for that machine, so I guess we are in the right room if that has to happen.

He seems to be staying some what stable with all the meds that they have him on and last night he was so awake it was nice to see him look at us. He does get very mad when he sees people talking to him and they can not pick him up. So we have to be careful when he is awake how much we talk to him. I don't blame him for getting mad. I know I want to pick him up every time I see him. I think that is the hardest thing, not being able to hold him and make him feel better. Well that is my thought for this morning. I am sure that I will have more updates as the day oes on.

Our sick little guy

2009-05-18T15:09:00.000-07:00

May 17th 2009

I know a lot of family and friends out there are wanting an easy way to keep up with what is going on with our little man. I am going to try to my best to update out blog page as often as I can to keep you all up to date with what is going on. For anyone that has not heard already we have a very sick little guy on our hands right now. We have found out that the left side of his heart is very enlarged or dilated. It is also not pumping out the amount of blood it should be. A normal heart should pump out about 70% of the blood that is pumped into it with each beat and his is only pumping out about 10% if we are lucky. So we are in the middle of a bunch of test some of which take a week to get back and some that will take 4 weeks or so to get back. So our new home for a while is going to be at the hospital. The doctors have told us that we may never find out what has caused this but right now we are just worried about making sure he stays stable and finding out what we have to do to fix him. The doctors have done a great job with letting us know every option that could happen, from letting the hears respond to medicine all the way to getting thing ready in case a heart transplant is the way that we have to go. I should have access to the Internet while we are at the hospital and will try my best to keep you all up to date with what is going on. We love you all so much and thank you for your thoughts and payers. Please keep them coming.

Below is a picture from before we found out he was sick just in case you have not seen how cute he is.