Long last week and weekend

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

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.

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

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

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

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

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.