Cardiology...

Well first off it only took three hours that's a new record for Primary Children's.  He had an echocardiogram which is an ultrasound of his heart.  The last echo when he was five days old showed three holes in his heart, two in the lower chambers, and one in the top chambers.  He also had two leaky valves, a ductus that didn't close, and pulmonary hypertension.  Yesterday's echo shows the two bottom holes closed on their own they are completely gone, the upper one is smaller, the leaky valves don't leak anymore, the ductus is closed, and the pulmonary hypertension is GONE.  So the only thing they are watching now is the one ASD (hole in the top chambers).  They said if it doesn't close on it's own by the time he is three they will close it but it's getting smaller so they are very optimistic that it will take care of itself.  We don't have to go back to cardiology for a whole year.  That's it that's the new news.

Today is the big heart day!

We go into the cardiologist today at 1:00 wish us luck.  Hopefully Baby Dawson relaxes and holds still while they do the echo so they don't have to sedate him.  I am going to try to keep him up the rest of the morning so he is really tired when we get there.  It usually takes about five hours out at Primary so I will update everyone as soon as I get a minute tonight.

Another good appt.

We went to visit Dr. Judd yesterday for Dawson's two month well check.  Dr. Judd said Dawson is growing very well.  He is actually on the "typical" child growth chart which evidently doesn't happen often with Down Syndrome kids (they have their own growth chart).  So Dawson is weighing in at 8 lbs. 15 oz. and he is 22 inches long (thanks to the liquid gold).  He said he doing very well his muscle tone is very good except for the fact that he has to hold up his heavy head and that's kinda hard but we're working on it.  Dr. Judd still can't see baby's eardrums because of his teeny tiny canals but I know he can hear because his brothers and sisters wake him up all the time.  The early intervention lady had mentioned that she thought he had some pretty concerning vision problems but Dr. Judd said not to worry about it because he was staring at the planets on his wall.  Also we had a vision specialist from the school for the blind come to our home yesterday and she said that he focuses on faces and he looks like he has normal vision to her but she will check again in six weeks to make sure.  Baby got his shots yesterday and did very well with it after of course he screamed at the nurse picking on him.  Dr. Judd says baby's heart and lungs sound very good and think that when we go to cardiology this Friday they will have more good news for us.  We are very lucky to not have a lot of the problems that some Down's kids have but we are staying very cautious because there can be problems down the road.  We are going to stay optimistic and deal with problems as they arise.  

Last Saturday Dawson and I spent the day with a very talented lady that took a lot of time making sure she caught how cute Baby Dawson is on camera.  I got an email last night that his pictures are done and she is putting the disc in the mail.  Here is a link to her website http://amr-photo.com/# go to the site and click on client proof the username is Dawson and the password is Call.  They are the cutest dang pictures ever.  She is doing our family photos soon so we will have updated pictures of the other kids too!

After years of planning and looking JR and I finally bought our first boat.  We decided it would be a good time to spend more time with the bigger kids.  We have gone twice this year and the kids had a blast even though it was really windy the first time and freezing the second.  The kids still got in the water and went tubing.  The little boys love just cruising around on the tube and the big boys get a little crazier we actually flipped the big boys right off the tube but they came out of the forty degree water laughing.  Jaycee just hangs out on the boat with mom and dad and holds the flag.  KayDee is still getting used to boating so she decided to stay home last time.   I dropped JR off at the boat dock and backed up too soon so he fell in the lake fully clothed with his phone and everything on.  He didn't come out of the forty degree water laughing.  The only thing he really said was that'll teach me to leave my stuff in the boat!  Baby Dawson isn't quite old enough to go on the boat yet so he stays home with Grandma which he probably prefers because all she does is hold him and rock him and sings cute little songs.  I am so lucky to have such a great family.

The up's and down's...

We have been very busy with this little guy.  About a week after birth we found out that Dawson has three heart defects and pulmonary hypertension.  We met with the cardiologist and he told us that fortunately Baby Dawson will most likely "grow out of it".  In the exact words of the Dr. "when we do a major heart surgery on a child and leave defects like Dawson has we think we have done an excellent job".  Yay some good news after the bad news.  As far as the hypertension goes we won't know about that until Friday at our next cardiology appt. He came home on oxygen because his oxygen saturations were low but in the last month or so has not required any to maintain his saturations (more good news).

Dawson was also diagnosed with a rare metabolic disorder called MCAD deficiency.  In short his body does not metabolize medium chain fats to use for energy so he has to be fed A LOT to keep those energy fats in his body.  The real danger is if he gets sick and needs the extra energy to get better.  If he gets a fever or vomiting we need to get him to the hospital so they can give him the nutrients he needs.  The Drs. in the NICU found this when they did his PKU test.  It is not related to Down Syndrome at all.

In the last few weeks we have been spending quite a bit of time with the Audiologists (hearing Dr.) because Dawson keeps failing his hearing tests.  We have come to the conclusion that Baby Dawson has fluid in his ears which is making it hard to hear.  So off to the ENT for more testing and most likely tubes in the ears to help the fluid drain.  All of this is very typical of Down Syndrome kids their ear canals are very small and fluid has a hard time draining.

What I am trying to get to is we have been to or we are scheduled to go to about every "ist" there is. cardiologist audiologist metabolic specialist ear nose and throat specialist genetisist and of course our very special pediatrician that has given me some very good advice (Dawson is more normal than not normal and he is just a baby that needs to be treated just like a baby).  He also told me not to let all of his diagnoses consume my life he is still just a little guy that needs a lot of love and snuggles just like any other "typical" baby.  So that's what we do give him lots and lots of loves (if you could see my dirty house and piles of laundry you could see that's pretty much what I do all day).

All in all this first year or so of learning all of his "special needs" will be hard but we as a family will take it and learn from it and become stronger.  He has been such a joy to us and JR reminds me all the time that we are a team and all of us together can overcome almost anything that is given to us.  JR has been my rock through all of this I am very fortunate to have such a wonderful husband and the kids are very lucky to have him for their Daddy.

So we start a new chapter

I decided to start blogging so that all of you that are wondering how our large little family is doing can come check it out.  Just so you all know right off hand I am lazy when it comes to proper english so don't expect too much!

Okay as most everybody knows we welcomed a very special new addition to our family on St. Patricks day this year.  After a pretty hard pregnancy with a ton of up's and down's my water broke at 3:30 p.m.  JR came home and off we went to the hospital.  They hooked me up to all of their gadgets and at exactly 9:30 p.m. our little leprechaun made his grand entrance.  We named our special little guy Dawson Justin and I knew as soon as I saw him he was special.  He weighed 5 lbs. 14 oz. and was a very long 19 1/2 inches.  After everything happened there I went to surgery (we decided that seven was plenty for our family) while dad and Dawson went to get cleaned up.  When I got back to my room JR told me that Dawson had to go to the NICU because he was having a hard time breathing.  Deep down in my heart I knew it was more than that.  So after a couple of hours of just sitting without talking to any medical person the Dr. finally came in and said she had the same concerns that I had she also thought Dawson had Down Syndrome.

So after the news had set in I went down to the NICU and met the sweetest little boy that I was so afraid to meet.  I spent the next two days crying and grieving for the little boy that I thought I had "lost".  I left the hospital still very much in pain and unable to cope with the feeling of doom that I had.  I got home and my son Ayden asked what is wrong I looked at him and said "the baby has down syndrome" He turned to me and said "so what".  It was at that moment that I realized yeah...so what.  We all have been very blessed by a very special spirit.  Dawson is the sweetest little guy with the best personality he has made my life much more fulfilling and I have found that I never really knew what I had been missing.  JR and the kids ADORE him and think he is the cutest thing ever they all fight about who's going to hold him or talk to him or play with him.  Everyone is so in love with the little guy.  Thank you God for giving us this very special gift.