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.
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