My children could live in the water..
GO FASTER!!!
Saturday, July 18, 2009
And this..... IHH picnic 2009
this was my "heart beat bunt"
crafting and eating snow cones, it really doesn't get any better
watching the magic show
cute shirts....
Friday, July 17, 2009
The future.
Lately it seems like many are wondering what Gator's next step is. We are living such a normal life that no one would know that he is medically fragile. He "looks" healthy to so many, including us that it is nice forgetting that he will need more surgeries and medical treatments. So this is the synopsis.
Currently Gator is doing better than ever. His Dig and summer is giving him just the boost it takes to feel stellar. His saturation levels are in the high 80's to low 90's. He dips sometimes, but for the most part is doing really well. He was weighed currently and is about 26.4 LBS. That is good news because unless he goes into heart failure we are just supposed to pack on the pounds. He needs to be at least 15 kilos or 33 ish Lbs for his third stage surgery the Fontan. He doesn't go back to Cardiology until Nov. Now this could be his final surgery for quite some time. Although we have heard that because the right side of the heart, the side that Gator has, is not smooth muscle it will eventually wear out. Now that could be at any time for him, it could be one year, five years or it could be many many years post op of the Fontan. We just don't know because there are not many HLHS kids out there with their original anatomy. We did have the opportunity to meet a fantastic gal at the IHH picnic who is 23, married, going to collage, and just got the green light to have children. She has HLHS and also has her original repaired anatomy. It was so cool to meet her. It was also very inspiring. So it is sit an wait at this point. Gator will have his ENT consultation at the end of this month. I think it will resolve a lot of problems if we do have tubes put in. He will not have as many or any infections which will mean no antibiotics which means no c-diff. His last antibiotic seems to have passed through his system without a problem.(knock on wood) So maybe it behind us.
So that is were we are.
Currently Gator is doing better than ever. His Dig and summer is giving him just the boost it takes to feel stellar. His saturation levels are in the high 80's to low 90's. He dips sometimes, but for the most part is doing really well. He was weighed currently and is about 26.4 LBS. That is good news because unless he goes into heart failure we are just supposed to pack on the pounds. He needs to be at least 15 kilos or 33 ish Lbs for his third stage surgery the Fontan. He doesn't go back to Cardiology until Nov. Now this could be his final surgery for quite some time. Although we have heard that because the right side of the heart, the side that Gator has, is not smooth muscle it will eventually wear out. Now that could be at any time for him, it could be one year, five years or it could be many many years post op of the Fontan. We just don't know because there are not many HLHS kids out there with their original anatomy. We did have the opportunity to meet a fantastic gal at the IHH picnic who is 23, married, going to collage, and just got the green light to have children. She has HLHS and also has her original repaired anatomy. It was so cool to meet her. It was also very inspiring. So it is sit an wait at this point. Gator will have his ENT consultation at the end of this month. I think it will resolve a lot of problems if we do have tubes put in. He will not have as many or any infections which will mean no antibiotics which means no c-diff. His last antibiotic seems to have passed through his system without a problem.(knock on wood) So maybe it behind us.
So that is were we are.
Wednesday, July 15, 2009
well thought out
Ry thinks that all fluids come from cows... This means that white milk comes from a white and black cow. Chocolate milk comes from a brown cow. Yesterday she informed Jeff that orange juice comes from an orange cow.
We survived Girlies Camp, and have some funny laughs, the cup game and the gold panties burning. I am so far behind in photo's that It will be a couple of days of pictures...
We survived Girlies Camp, and have some funny laughs, the cup game and the gold panties burning. I am so far behind in photo's that It will be a couple of days of pictures...
Wednesday, July 8, 2009
How we've been do'in
My mom used to use a phrase when I was little; I didn't like or really appreciate it until now. When I was upset, angry, or sad and it showed in the expression on my face. She would look at me, and try and get me to laugh by saying "If you keep holding your face that way it will stick like that forever" Then she would pull a funny over exaggerated expression and I would end up laughing and it would take the strain out of the situation.
Well we are holding our faces with smiles hoping they stick that way.
We are really doing great.
This last baby failure has certainly been the hardest on my body. I am getting better and I haven't needed to have any surgical intervention (luckily). I understand why it has happened, I have accepted that things like this do happen. But, the darn cruddy part is that my body is so slow at recovering and I don't have the happy part to make it better. My emotions have healed, now I just wish I could go swimming. LOL
Daddy is busy as ever. We got invited to attend girlies camp this weekend. We are also going to do another assignment at the temple. It is run run run as fast as you can for him.
Ry is funny she loves playing outside at about 6 p.m. when it isn't super hot and asks on a daily basis to go on a walk. I need to come up with some fun projects to do inside in the AC to hold her over to the evening. She visited the dentist again, no problems and no cavities. She also asks for play dates every day too. I was hoping to work with her letters, I haven't, instead I have slacked off. I have taken her to the library, we have read tons of books together. Just no letters. pOO!
Gator is finally going into see the ENT at the end of the month I looked in his ear and I am no doctor but it still looks pretty ouchie. He is talking a mile a minute, his new favorite thing to say is CRAP, and oh goosh! Or, BIG(insert any type of vehicle here) ! He hangs on everything. He hangs on the door to the oven and pulls it open which knocks him to the floor. He also hangs on the island in the center of the kitchen, today he smacked his lip and because of his asprin he bled and bled. It freaked him out a little to see all that blood. Nothing a little pressure, a couple paper towels and a new shirt couldn't fix.
We are still planning some fun things this summer, I was gung-ho about doing fun things and now I have kinda sizzled out a little. I gotta make my list of things to do before summer ends just so I can make sure we do it all...
I have a bunch of photos to post, so you can see that I am not a totally lame momma.
Well we are holding our faces with smiles hoping they stick that way.
We are really doing great.
This last baby failure has certainly been the hardest on my body. I am getting better and I haven't needed to have any surgical intervention (luckily). I understand why it has happened, I have accepted that things like this do happen. But, the darn cruddy part is that my body is so slow at recovering and I don't have the happy part to make it better. My emotions have healed, now I just wish I could go swimming. LOL
Daddy is busy as ever. We got invited to attend girlies camp this weekend. We are also going to do another assignment at the temple. It is run run run as fast as you can for him.
Ry is funny she loves playing outside at about 6 p.m. when it isn't super hot and asks on a daily basis to go on a walk. I need to come up with some fun projects to do inside in the AC to hold her over to the evening. She visited the dentist again, no problems and no cavities. She also asks for play dates every day too. I was hoping to work with her letters, I haven't, instead I have slacked off. I have taken her to the library, we have read tons of books together. Just no letters. pOO!
Gator is finally going into see the ENT at the end of the month I looked in his ear and I am no doctor but it still looks pretty ouchie. He is talking a mile a minute, his new favorite thing to say is CRAP, and oh goosh! Or, BIG(insert any type of vehicle here) ! He hangs on everything. He hangs on the door to the oven and pulls it open which knocks him to the floor. He also hangs on the island in the center of the kitchen, today he smacked his lip and because of his asprin he bled and bled. It freaked him out a little to see all that blood. Nothing a little pressure, a couple paper towels and a new shirt couldn't fix.
We are still planning some fun things this summer, I was gung-ho about doing fun things and now I have kinda sizzled out a little. I gotta make my list of things to do before summer ends just so I can make sure we do it all...
I have a bunch of photos to post, so you can see that I am not a totally lame momma.
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