I have not posted since May. I started a carepage for Miles...click here to see it. I have been better at updating that. My family requested an email when I updated...
Here are some recent pictures. Everyone is doing very very well. Miles did stop growing and we are awaiting the test results from the endocrinologist as I type this. They are testing for a thyroid problem, growth hormone deficiency and/or Celiac disease. I am hoping that they find nothing - those all suck! I will update with the results when we get them. Both boys have a dentist appointment this week, that should be fun! (ha!) We practiced dentist tonight so that should help. I am a big fan of practice.
We do have some big news that I have not posted on the carepage yet - you get the first peek at it! Miles has been potty training this week and last! He is doing very very well!!!! He has a hard time with public potties but is doing beautifully here at home! He is singing behind me - "This is the day...This is the day...that the Lord hath made..." I love it!!
Here is a conversation between Riley and myself from last week:
Riley: "Mommy, Alex (a heart friend of ours) saw Miles' bald spot."
Mommy: "That is okay, no big deal" Riley: "Does Alex have a bald spot?"
Mommy: "Nope." Riley: "How did Miles get his?" Mommy: "After Miles' surgery he got a big sore on his head and the hair fell out."
Riley: "Do I have a bald spot?" Mommy: "Nope." Riley: "Did I have surgery when I was a baby?" Mommy: "No. Remember Miles was missing a piece of his heart so he had surgery to put the missing piece in..."
Riley: "The cow piece right?" Mommy: "Yes, the cow piece."
Riley (with a grin): "Mommy...Miles is a...Cow Boy."
Priceless!!!! I love it!
Miles quote - we were talking about how someone was 'just' like him
"No one is no one like me!" (you got that right mister!)
Monday, July 23, 2007
Friday, May 04, 2007
Tuesday, April 03, 2007
Cardiology Check-up
We just got home from our heart check up. Miles did so well - I am SO PROUD OF HIM!!! He stayed so still throughout the whole echo, he was amazing! We practiced again last night - it paid off! He did such a good job with the EKG too! Last time we went they didn't get an EKG because he screamed too much. He was a model patient today! If you have Child Life at your hospital, you should really check it out! It has been a life saver!
Down to the results...The regurgitation in his pulmonary valve has gone from moderate to severe. He said not to worry about this as children can have pretty bad regurgitation for a long time before it does anything to their hearts. The conduit has "a little bit" of narrowing, but again we shouldn't worry about this. The pc said we could get a couple more years out of both the conduit and the valve. The fenestration (or hole they made in his heart during the last surgery) is 5mm - a medium size hole. He said that too can stay a little longer. He said it looks like Miles can be surgery free for a couple more years!!!! We are so excited about this! He was such a good kid today, the reward he has requested is cake - so cake he shall have :)
Cute Miles sayings: When we pulled into the church parking lot on Sunday I said, "We are here at church" Miles says "This place makes my heart happy!" WOW!!! Today when we got to the hospital he says "This place makes my heart happy!" I explained to him that both of these statements are true!!! So today all of our hearts are happy! I was scared that they were going to say things were bad but we are so glad to not need anything for a while. Lets hope it stays that way!
They did have one concern...This time last year Miles was 88cm tall. Today Miles is 88cm tall. He has not grown even one cm in a whole year!! He has gained weight but not gotten any taller. He has gone from the 50th percentile in height to below the 5th. We have to keep a close eye on this or we will need to go see an endocrinologist to test his growth hormones. He is pretty short...Will be three next month and is still in *some* 18 month pants but mostly 24 month.
Thanks for checking in on us! We love to read your messages :)
The Suggs bunch
Down to the results...The regurgitation in his pulmonary valve has gone from moderate to severe. He said not to worry about this as children can have pretty bad regurgitation for a long time before it does anything to their hearts. The conduit has "a little bit" of narrowing, but again we shouldn't worry about this. The pc said we could get a couple more years out of both the conduit and the valve. The fenestration (or hole they made in his heart during the last surgery) is 5mm - a medium size hole. He said that too can stay a little longer. He said it looks like Miles can be surgery free for a couple more years!!!! We are so excited about this! He was such a good kid today, the reward he has requested is cake - so cake he shall have :)
Cute Miles sayings: When we pulled into the church parking lot on Sunday I said, "We are here at church" Miles says "This place makes my heart happy!" WOW!!! Today when we got to the hospital he says "This place makes my heart happy!" I explained to him that both of these statements are true!!! So today all of our hearts are happy! I was scared that they were going to say things were bad but we are so glad to not need anything for a while. Lets hope it stays that way!
They did have one concern...This time last year Miles was 88cm tall. Today Miles is 88cm tall. He has not grown even one cm in a whole year!! He has gained weight but not gotten any taller. He has gone from the 50th percentile in height to below the 5th. We have to keep a close eye on this or we will need to go see an endocrinologist to test his growth hormones. He is pretty short...Will be three next month and is still in *some* 18 month pants but mostly 24 month.
Thanks for checking in on us! We love to read your messages :)
The Suggs bunch
Monday, March 26, 2007
Practice Echo...
Miles' heart check up is on April 3rd. It feels like we have been waiting for it forever! His last echo was November 2005!!!! Can you believe it? We went in April 2006 because he started to crack when you pick him up but the pc thought he looked so good we could wait a whole year to come back. So now we are approaching 18 months without an echo. I am a little worried, just like any mom would be (especially us heart moms, we get trophies for worry we are so good at it). So tonight we did some fun things. We practiced an echo and an EKG. It's My Heart had a child life specialist come and talk at our monthly meeting last month about testing and blood draws and that sort of thing.
We brought home EKG stickers, lubricant, heart monitor stickers, band aids, and a WONDERFUL doll called a shadow buddie. It is a doll with a scar on his chest and a scar on his heart. He even looks like Miles, except this one has blue eyes but has the red curly hair - he is perfect! We like him alot! Miles even sleeps with him. Well tonight his buddie had an echo (or a goo test) and a sticker test (EKG). Riley helped. He let Miles use the roll on deoderant (ultrasound probe aka camera) to take his picture. Then Miles let Riley take his picture. Then we put stickers on and practiced FREEZE! 1 2 3 4 5...They did great! Miles didn't really freeze completely but good enough for an EKG. He didn't scream when we took the stickers off (didn't do anything really). SO, SO proud of them!!! We are going to practice again before the appointment and hopefully we will do okay. This is the first unsedated echo - I have heard horror stories about how it could go. His appointment is at 9am - I could just bring him hungry - just in case.
We brought home EKG stickers, lubricant, heart monitor stickers, band aids, and a WONDERFUL doll called a shadow buddie. It is a doll with a scar on his chest and a scar on his heart. He even looks like Miles, except this one has blue eyes but has the red curly hair - he is perfect! We like him alot! Miles even sleeps with him. Well tonight his buddie had an echo (or a goo test) and a sticker test (EKG). Riley helped. He let Miles use the roll on deoderant (ultrasound probe aka camera) to take his picture. Then Miles let Riley take his picture. Then we put stickers on and practiced FREEZE! 1 2 3 4 5...They did great! Miles didn't really freeze completely but good enough for an EKG. He didn't scream when we took the stickers off (didn't do anything really). SO, SO proud of them!!! We are going to practice again before the appointment and hopefully we will do okay. This is the first unsedated echo - I have heard horror stories about how it could go. His appointment is at 9am - I could just bring him hungry - just in case.
Thursday, February 22, 2007
I didn't forget about you...
Hi there everyone. I didn't forget about my blog, promise. I started a carepage because my family will check it if they receive an email that I have updated. Oh well, not everyone has bloglines...
So here are my super cute kids! This is a picture that they gave me for my birthday (yesterday). I just love it, they are the best! Thanks Abuelita for doing that, it was very sweet.
The It's My Heart Awareness Walk was a success!!! It was awesome in an out of body experience kind of way. In that there were all of these wonderful people there having fun, getting to know one another, sharing their stories, their children playing together...And I had a part in bringing them all there. WOW! That is so big! In comes the out of body experience part. It was great. The only part that I didn't like was when the health department got there to do their inspection (I was in charge of food). That made me a little nervous, but we did okay.
Thank you, Thank you, Thank you to all who donated to the walk and helped make it such a big success!!! The total is upwards of $24,000!!!!! If anyone remembers, that was more that I was paid when I worked for Harris County!
off to bed for me...
Becky
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