2015

It has been a long time since we posted anything and this will probably be one of the last posts.  Brodie has been doing great and we are finally back to our "normal" lives that we had before he was born.  LaVona is back to work and Brodie now goes to day care.  Bradie started kindergarten this year and he loves it.  Brodie has a very strong personality and always keeps us on our toes.  He no longer has any therapy or nursing and if you didn't know his story you wouldn't know that anything was ever wrong with him.  He still has his g button that we give him milk through but that is just so that we can get him extra calories so that he will grow like the doctors want him to.  He does eat but he is not all that interested in it.  Brodie has more energy than any kid I have ever met.  He is constantly going and does not like to stay in one spot for any period of time.  He is potty trained and seems to be right in line developmentally with kids his age. The one issue that we have is that he still does not sleep through the night and wakes up screaming at least a few times each night which causes us to never get the sleep we need.  With that said he has truly been a blessing and has brought so much joy to our lives.  We are so thankful for everyone that has helped us get to this point.  Brodie truly is an example of the power of prayer.  Thanks again for all that each of you has done for us!  Todd, LaVona, Bradie & Brodie  

Brodie Update

I would first like to apologize for not posting in a long time.  Life has been crazy and I always tell myself that I will do it tomorrow.  Brodie has been doing great and if you didn't know what he had been through then you would think he was just like any other normal child.  My last post was right before he got the trach out which is probably the worst time to stop posting.  That went well and he has not looked back.  Every time we go to the doctor they only have good things to say.  Once he decided that he could get around faster and into more stuff by walking he took off.  He has been walking for about a month now and gets into everything.  We are amazed out how easy walking is for him since he decided that is what he wanted to do.  His therapist is going to put him in braces but it is just to correct some minor things so that he can walk even better.  We can't be more thankful for how things have turned out.  When you go from being told that your son will not walk and have a helper arm to now it is truly a miracle.  There is not a day that goes by that we do not thank God for what he has given us.  The blessings that we have experienced through this are too many to tell and although it has been a tough journey it has been well worth the ride.  We still have nursing at night and about 7 therapies a week but life is pretty much back to normal.  With normal life comes the stress, worries and craziness of everday life.  We try to remember what is important but sometimes life just gets in the way.  One thing that does not change is how grateful we are to each and every one of you that has followed Brodie's story and prayed for his recovery.  We had a really great day yesterday.  We got to see Brodie's first doctor, his second doctor (the one that made a lot of decisions that we feels saved him) and the head of neonatology.  It felt so good to set him down and let him walk in front of them.  They were amazed and you could tell that seeing him made their job worth all the long hours.  We will forever be thankful to the doctors, nurses and staff at Texas Children's Hospital.  Although it was never a place I wanted to be I am thankful that it was there for us when we needed it.  Again, I am so sorry for not posting sooner and thanks for all of the support over the last 18 months.  Yes, Brodie turns 18 months old tomorrow.  I hope that everyone is doing well and I will be in touch.

Bronchoscopy Went Well

The bronchoscopy went well today and the ENT said that the airway and vocal chords look great.  There was some granulated tissue from suctioning that he removed but other than that it went as expected.  They told us that they wanted to move forward with taking out the trach.  They admitted him and just let him rest today.  It has been a little stressful because after he woke up from the procedure his saturation was staying between 90-93.  We can't seem to figure out why he isn't doing as well as normal.  It has been a long time since we just sat and stared at a monitor praying that the number will go up.  They wanted him to be 92 or better to try and cap him and in true Brodie fashion, about an hour and a half before they were supposed to do it he suddenly went up and stayed at 93 or 94.  They decided to cap him and when they did he stayed at 94.  I guess we figured he would go down and kept waiting for it to, but he just stayed the same.  He has been doing great since and the ENT said he will come by at 6 in the morning and see how he did.  If he does well then they will take it out and monitor him all day.  As I type this I keep hearing little noises coming from his bed and realized that it was Brodie.  He can now make noise since capping the trach is like not having a trach at all.  We will see how tonight goes and let everyone know how things are progressing. 

Could Brodie be Trach Free Soon?

As I look back on the last 13 months I can definitely see that we have had some difficult times but now I can honestly say that we have made it through the tough times and are happier than ever.  We are blessed to have Brodie and are still thankful every day that things worked out the way they did.  Here is an update on what has been going on with us.  We took the boys out to Disneland all of last week and had a great time.  It was great to get away with just the four of us.  We had such a wonderful time and for that week life just seemed "normal".  Brodie did great on the plane and he even rode all the rides that he was tall enough to ride.  He not only went to Disneyland but he also went to the beach, Sea World, and his first baseball game.  He laughed and smiled most of the trip and only cried we he got near the Disney characters.  Who would have thought that after all he went through that he would have been taking a trip at 13 months.  We have been waiting to hear from the doctors about what we are going to about the trach.  We finally got the call yesterday that if there are no obstructions found during the bronchoscopy on Monday that they will take out the trach, monitor him overnight and send him home Tuesday trach free.  I can't tell you how happy that this makes us.  It will not only allow us to get back to a more normal life but we think it will definitely help him out developmentally.  If it comes out it is going to be crazy to be able to see his whole neck and always hear him talk, laugh and cry.  He has been really progressing lately and the therapists said that they think he will be walking by Christmas.  He is showing more of his personality every day and keeps us laughing all the time.  We will update you next week on how thing go on Monday and Tuesday.  Thanks so much for all of the prayers and we know that without all of you that he never would have made it this far. 

Brodie is ONE!!!!

I am sorry that I have not posted since Brodie's birthday.  Brodie has been amazing us daily and we are so thankful that we made it to a year.  We had such a great party and thanks to all of you that came to support Brodie and our family.  Once Brodie came off the ventilator and oxygen he never looked back.  For the past two months he hasn't made much progress but the last couple of weeks he decided it was time to get on the move.  He now goes from sitting to his stomach, from lying down to sitting and he has even started to do the military crawl.  We are so happy that he is on the move and can't wait to see what he has in store for the next couple of months.  If you were to see him you would not know that he had a rough start to his life and that he has had a stroke.  Once he gets the trach out he will look like a normal little boy.  We have a bronchoscopy scheduled for September 17th and if everything looks good they will possibly take the trach out.  We feel that he is ready and would have no problems if they took it out.  It sure would be nice to get back to more of a normal life.  If he does not get it out then we will have to wait until  March or April.  If it does not come out now that will be OK too because we never dreamed that he would be where he is right now.  We are constantly reminded of what a miracle we have and feel so blessed to have him in our life.  I can't imagine what our life would have been like if we would have lost him.  He brings so much happiness and joy to our lives and although it has been a tough year we can honestly say that it has been the best.  There are so many families of CDH babies that don't get to bring their babies home so we never want to forget how blessed we are.   Below I will post a link to the pictures from Brodie's birthday party.  I know there are alot but I hope that if you were not able to make it that you will enjoy the pictures.  I will let everyone know what we find out about the trach and again we thank each of you for everything you have done for us this past year.

 http://www.claytonwallace.com/mp_client/pictures.asp?eventid=0&groupid=225

The password is Todd

If you would like one of the pictures let us know.  We will have a cd and be able to print them out.

Brodie 10 Months and No More Vent

Brodie has reached the 10 month milestone and is improving daily.  What this means for our family is that we are finally getting back to a more normal life.  The picture above is Brodie at the Jimmy Buffet concert.  We are fully aware that this is probably not the best concert for his first concert but he had a great time.  I can't believe that back in September we were not sure that we would ever bring him home and then eight months later I would have him sitting between my legs rocking back and forth to Jimmy Buffett.  We are amazed daily at his progress and are so blessed to have such a special boy in our lives.  I can't say that it has been easy but the rewards far outweigh the hard times.  As of this morning Brodie is officially off the ventilator.  We went to the Pulmonolgist a couple of weeks ago and he was so amazed at Brodie's progress that he decided to be more aggressive with the vent wean.  He came up with a 12 day plan to get him off the vent and Brodie breezed right through.  We go in for a blood gas in a few days and hopefully that will look great as well.  He told us if he was off the vent and did not need the trach for ventilation then there was no need for the trach anymore.  He said that he could possibly get the trach out this summer.  Although this is great news we are thinking that it won't happen based on previous conversation but we will just take whatever comes our way.  Brodie looks great and that is all that matters to us.  We have offically decided today that we will be having Brodie's 1st birthday party on Aug 11, 2012 from 11:30 to 3:30 in The Woodlands.  We would LOVE for everyone that would like to come to be there.  We would like to not only celebrate Brodie's first year of life but also for everyone that would like to meet him to come out.  Whether you are are family, a good friend, medical staff or someone that we have never met that has followed his story we would be honored to have you.  The only thing we ask is that you let us know so that we know how much food to get.  There will be a splash pad, bounce house, playground, food and fun.  You can email us at vonasteward@msn.com.  Also, if you would like an invitation please give us your address.  Thanks again for everything that all of you have done and hopefully we will get to personally thank you in August.

Brodie 9 Months

It is hard to believe that Brodie turned 9 months on Tuesday.  Time has flown by and it blows our mind that in 3 months he will be one.  I can't tell you how proud of Brodie we are right now and how thankful we are that he has made so much progress.  He looks really good and is such a happy baby.  He has now been off oxygen for over a month and it looks like we will get the trach out maybe next April.  That seems like a long way off but it is definitely something to look forward to.  Brodie is sitting up by himself, clapping and even says mama and dada.  We never dreamed that he would progress as well as he has but we are so pleased.  He still has a tough time being on his tummy and when we put him on all fours his right side is too weak to keep him up.  These are the first signs of the effects of the stroke that we have seen.  Hopefully with all of the therapy that he gets he can overcome these deficits.  He had a developmental appointment on Thursday and they were amazed at his progress. They put him at 7-9 months and said he has caught up on quite a few things.  Life for us is still busy but it is very rewarding to see how far he has come and we know he will continue amazing us daily.  Tomorrow our church is doing their baby dedication so Brodie will be a part of that.  If any of you would like to watch it you can go to this link at 11:30 tomorrow and watch it live http://live.woodlandschurch.tv/.  We are so thankful to all of you a for everything you have done for us and hope that you are as proud of Brodie as we are.  I am also going to post a recent picture of our two boys as well so look for that.  Hope everyone has a wonderful Mother's Day and I know this one will certainly be special for LaVona.