I was asked yesterday on Facebook by a friend "What piece of advice would
you offer a new parent who just found out their child has Down syndrome
now that you have been there done that?"
I would tell her to remember
that her brand new beautiful baby is just that, a baby. He/She will
need the same bonding time and nurturing as any other baby so really
take that time and love on your new baby. There will be plenty of time
to learn about Down Syndrome and what all comes along with it.. I
remember always trying to look at my boys and figure out "what was Down
Syndrome" about them, when all I needed to do was admire their beauty
and love them unconditionally.
Elijah is loving my new iPhone. I can't get the darn thing off of him. He found the camera and decided to go and get some cute pics for me. I thought they worth sharing. Elijah is such a good big brother. He nit picks and wrestles with them like no other, but when the twins are not feeling well or having a melt down Elijah is the most gentle understanding brother there is.
I have not been keeping up the last couple days with my blog because Caleb and Isaac decided to get sick and keep me busy (or should I say busier)..
Yesterday morning around 3:30am Isaac awoke me by barking his horrible deep..deep croupy cough. I got up and took him outside into our 45 degree rainy weather to see if that would help. He really didn't appreciate that and started scratching me and yelling and making the croup worse. I took him back inside and rocked him back to sleep. I usually give it a good one or two tries to get them to stop before I call it quits and head to the ER. Well, Isaac slept for another whole 20 minutes and back up crouping again. I decided to head off into the ER with him.
Here is where I explain the difference between my "typical children" and my guys with "Down syndrome". See its not the Down syndrome that ALWAYS puts me on high alert when and if they get sick.. My other 3 children, when they were croupy we just cuddled them and got through the night for a few nights without seeing the doctor. The twins on the other hand, they both have other underlying medical conditions that we have to take care of sooner than later. It IS NOT because they have Down syndrome. They both have grade II subglottic stenosis, size 3+ tonsils (when not infected) and asthma. Subglottic stenosis means they have narrow airways. We were told they were both very close to having to have a trach when they were evaluated as infants. Their airway is only 60% normal size and this does not stretch, but will continue to grow with them as they grow bigger. This means they will always have a narrow airway, but always be at risk when swelling occurs. Their first two years they had strider so bad it was nerve racking for us to always hear them breath like they were struggling. So, I DON'T mess around when they sound croupy.
After arriving at the ER we found that Isaac also had an ear infection. Poor bugger got tubes in his ears this May for the second time and when we went in June for our follow up to the surgery, one tube had already fallen out :( This is the ear with the infection. After 2 shots of Rocephin and a shot of Decadron and a new red teddy bear, we were sent home.