The cardiologist said that Mason's echo looks the same as last time so that was good news! Appears that Mommy was worrying for nothing.
The appointment was rough - and that is putting it lightly! The first thing they do when we get there is get his weight, height and head measurement. He screamed the entire time! Then we are taken to the smallest room ever to get an EKG, blood oxygen saturation and blood pressure. Well, we only got the stickers on for the EKG. He screamed the entire time! Dr. Battiste came in and told the nurse that we would try to get it all in the Echo room where we could put his favorite DVD in the TV and hope that he calmed down. So, the doctor still had to do her physical assessment. He screamed the entire time! Off to the Echo room where we get a blood oxygen saturation of 84 which is a little low for him but are we surprised because he screamed the entire time! (starting to get the picture?) Next was the EKG. So, I laid him back on the table and she successfully got the reading. He screamed the entire time! We tried to get a blood pressure but no luck because he screamed the entire time! More screaming but he finally settled in and watch the Mickey Mouse DVD that we brought while Mommy sangs to him. I'm sure the doctor and nurse loved it! The last thing was the blood pressure. After a couple of tries, we finally got a good one with only a little response from Mason. I think we had finally broke him down. We had a few questions for the doctor and when she walked out of the room, Mason said "Bye!" with the biggest grin. Mom and Dad were worn out. Mason's next appointment is in four months. We do need to go by the pediatrician's office to have some blood work drawn. I'm sure that will be lots of fun because he will be screaming the entire time!
We are headed to Missouri to see my family for Thanksgiving. This will be the first time that a lot of my family has met Mason. I am very excited and hope that everyone is healthy enough to meet our little guy. Saturday, we will head back to Kansas with a stop at Randy's brother's house for another Thanksgiving get together. What a difference a year makes! We are very thankful this year.
On a related note, I volunteered to drive for Mia's field trip last week and noticed a craft project on the wall in her classroom. Each child was given a feather of the turkey's tail and asked to put on it one thing that they were thankful for. Mia's said, "I am thankful for my Mason." I also learned another interesting thing about Mia during parent-teacher conferences. Each morning at Mia's Christian school, Mrs. Primm goes around the room and asked each child if he or she would like to pray. Mrs. Primm said that Mia always prays for her brother to get better. She said that Mia has even told some of the other kids about Mason and they sometimes pray for him, too. I am so proud of her!
Hope you all have a wonderful and safe Thanksgiving!
Monday, November 22, 2010
Doctor Appointments
GI Specialist
We took Mason to see a GI Specialist from Children's Mercy in Kansas City. Dr. Jack Daniels (not kidding!) comes to our pediatrician's office once a month to see children in this area. The appointment was great. He has a lot of ideas and we are excited to work with his team to get Mason on a more "normal" feeding schedule - even though he won't eat on his own. The first step will be transitioning Mason's feeds from his intestine to his stomach. We left with some homework - need to talk to both the Cardiologist and GI Surgeon and get some answer to some questions. This is going to be a team effort but we are really happy with how the appointment went.
Cardiologist
Mason sees his cardiologist today for the first time in four months. Yes, FOUR MONTHS. It is crazy that we made it this long. Last year at this time, Mason has appointments every week! What a difference a year makes. I ask that you all send your good thoughts and prayers for a good appointment today. There have been days lately that Mason's color does not look as good as it had in the past, as least in my opinion. I try not to focus on it knowing that he can have good days and bad days but I still worry all the same. Recently, he seems to be more tired but he is also much more active and has not been sleeping all that well. Hopefully, the recent changes that we have noticed are all explainable by "normal" baby activities - such as teething and tough time sleeping. Please keep us in your thoughts and prayers this afternoon. Please also send happy thoughts to Mason so that he does not freak out around the doctor and nurse. He has become very sensitive around those with stethoscopes! I will post again with results of the visit.
We took Mason to see a GI Specialist from Children's Mercy in Kansas City. Dr. Jack Daniels (not kidding!) comes to our pediatrician's office once a month to see children in this area. The appointment was great. He has a lot of ideas and we are excited to work with his team to get Mason on a more "normal" feeding schedule - even though he won't eat on his own. The first step will be transitioning Mason's feeds from his intestine to his stomach. We left with some homework - need to talk to both the Cardiologist and GI Surgeon and get some answer to some questions. This is going to be a team effort but we are really happy with how the appointment went.
Cardiologist
Mason sees his cardiologist today for the first time in four months. Yes, FOUR MONTHS. It is crazy that we made it this long. Last year at this time, Mason has appointments every week! What a difference a year makes. I ask that you all send your good thoughts and prayers for a good appointment today. There have been days lately that Mason's color does not look as good as it had in the past, as least in my opinion. I try not to focus on it knowing that he can have good days and bad days but I still worry all the same. Recently, he seems to be more tired but he is also much more active and has not been sleeping all that well. Hopefully, the recent changes that we have noticed are all explainable by "normal" baby activities - such as teething and tough time sleeping. Please keep us in your thoughts and prayers this afternoon. Please also send happy thoughts to Mason so that he does not freak out around the doctor and nurse. He has become very sensitive around those with stethoscopes! I will post again with results of the visit.
Wednesday, November 10, 2010
Haircuts
It was haircut night at our house last night for Mia and Mason. Mia decided that she wanted to go short and it looks really good and she loves it. Mason's hair had gotten so long that it was starting to have tangles in it each morning. He looks like a big boy now. Tonight I thought I would try to take a picture of them to share and it turned into quite the project. Here is how it went.
This was the first one and looks pretty good if you can't see that Mia has chocolate around her mouth from the candy bar she ate.
Mia now has a clean face but Mason was so excited that he couldn't stop moving and biting his hands.
Good picture of Mia but you can see another one of Mason's habits is biting his tongue in the left side of his mouth. This started when he was first getting teeth.
Cheesy Mia smile and there is that tongue again!
Again Mia is a natural poser but what is that Mason doing. I guess he wanted everyone to know that we do a really good job of washing his neck - all clean!
Alright, I'm done!
This was the first one and looks pretty good if you can't see that Mia has chocolate around her mouth from the candy bar she ate.
Mia now has a clean face but Mason was so excited that he couldn't stop moving and biting his hands.
Good picture of Mia but you can see another one of Mason's habits is biting his tongue in the left side of his mouth. This started when he was first getting teeth.
Cheesy Mia smile and there is that tongue again!
Again Mia is a natural poser but what is that Mason doing. I guess he wanted everyone to know that we do a really good job of washing his neck - all clean!
Alright, I'm done!Tuesday, November 2, 2010
Happy Fall!
Wow, okay, it's been almost 6 weeks since our last update. It's so much easier to update these things when you are removed from the working world but I would rather be working than stuck in a hospital. So a 6 week update it is! Which is a good thing.........
Mason is growing like a weed. Well, a chubby weed. He went from being almost off the charts to, I think, the 5th percentile in weight just recently. An awesome achievement no doubt. The G/J surgery was worth it but we continue to have challenges in that area along with getting him to eat. Our biggest challenge here in Wichita is finding someone willing to take Mason's stomach challenges on. We find that most doctors are interested but with his overall heart condition they are not comfortable doing certain procedures, tests, etc.....Or at least we can't find an anesthesiologist who is. We continue to press on. If his stomach is the biggest issue we have to deal with right now, I guess we can't complain too loudly. However, I want someone to help my son!
That said the kid never ceases to amaze us. He is a natural born clown and I am okay with admitting he gets that from his dad. He has taken a liking to wrestling and I can't hardly pick him up now without him trying to push me over. He knows roughly 25-30 words now too. Half of which come from Mickey Mouse Clubhouse. "O'Toddles" to name one. He recently learned part of a Justin Bieber song so not only do I get to listen to that from Mia, now my son is singing "Baby, Baby, Baby, Oh........". I am sure there are more but I don't want to make this too long. We did go to a pumpkin patch recently so we thought we would share those photos along with some others. Enjoy!
One of Mason's favorite past time activities....the lazy Susan!
Mason is growing like a weed. Well, a chubby weed. He went from being almost off the charts to, I think, the 5th percentile in weight just recently. An awesome achievement no doubt. The G/J surgery was worth it but we continue to have challenges in that area along with getting him to eat. Our biggest challenge here in Wichita is finding someone willing to take Mason's stomach challenges on. We find that most doctors are interested but with his overall heart condition they are not comfortable doing certain procedures, tests, etc.....Or at least we can't find an anesthesiologist who is. We continue to press on. If his stomach is the biggest issue we have to deal with right now, I guess we can't complain too loudly. However, I want someone to help my son!
That said the kid never ceases to amaze us. He is a natural born clown and I am okay with admitting he gets that from his dad. He has taken a liking to wrestling and I can't hardly pick him up now without him trying to push me over. He knows roughly 25-30 words now too. Half of which come from Mickey Mouse Clubhouse. "O'Toddles" to name one. He recently learned part of a Justin Bieber song so not only do I get to listen to that from Mia, now my son is singing "Baby, Baby, Baby, Oh........". I am sure there are more but I don't want to make this too long. We did go to a pumpkin patch recently so we thought we would share those photos along with some others. Enjoy!
Ignore the thumb and pay attention to the chubby cheeked one!
One of Mason's favorite past time activities....the lazy Susan! 
This picture was taken by a complete stranger at the pumpkin patch. From left to right: Mason, Mia, Amy, and Baldy.
Future Pumpkin Pies of America (PPA)!
This one is for Amy. She hates washing syringes each week and she thought she would take a picture of Mason's weekly syringe stockpile so you could feel some of her pain too!
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