Friday, July 27, 2012

Good News and Bad News

So some of you may have already heard the bad news: the drainage pipe in our A/C broke and leaked gross water all over the kids' bedrooms. This afternoon. So we had to cancel Lily's party tomorrow. :-( We are still going to eat cake with family and try to get together with her little friends later in the week, but my vision of her perfect birthday celebration is all gone, sadly. This is really motivating me to save my pennies for a venue party for her next year, so even if our house is a shambles the show can still go on.

The good news: All of Daniel's appointments this week have gone wonderfully!

On Thursday morning, we met with our ECI service coordinator and an occupational therapist to evaluate Daniel's capabilities and make an IFSP (individualize family service plan). He did very well. He was able to lift his head up while he was on his belly and track a toy from side to side. He also showed off by rolling tummy to back and grasping at a toy. I was hoping he'd give the therapist a big old smile but no such luck. :-) Currently he is evaluated at a 1 month level (right on target) so that is good news. He is doing a few advanced things but I don't think they really evaluate for advanced children as they are supposed to be doing early intervention. I do not expect him to stay on time or advanced at all, but it was nice to hear, even if this is the only time I get to hear it.

So for now the plan is to meet with the OT (occupational therapist) once every two weeks and add more therapy sessions as needed. I want to get him started with physical therapy ASAP and possibly add speech therapy by six months of age.

We did talk to the OT about something that made me a little sad. Because babies and children with Down Syndrome can have issues with hip abduction (altered movement patterns can cause issues when learning to crawl or walk), we probably will be discontinuing our use of cloth diapers with Daniel. As funny as it might sound to some of you, this is the first time something related to Daniel's DS diagnosis has made me upset for a somewhat superficial reason ;-). Because the cloth diapers are thicker and are bulkier between his legs, and he wears a diaper 24/7, they could possibly make these hip problems worse or make them more likely. So we're using disposables with him for the foreseeable future. I'm trying to look on the bright side and appreciate how much more convenient disposables are. Even if they aren't as cute and are more expensive. :-)

FYI, for the same reason we are unable to use baby carriers which cause him to spread his legs too far apart, as well as exersaucers. Family members should be careful not to hold him on their hips as well after he starts to get head stability (I'm going to have a hard time with this one, as it is so natural as a mom). We want to avoid "froggy legs" and "W sitting."

Later Thursday afternoon we went to Daniel's follow-up cardiologist appointment. We received good news there as well. First of all, he weighed in at 10lbs 7oz, which was a 7 oz gain since last Friday! He grows out of the infant insert in his car seat at 11 lbs and grows into size 2 diapers at 12 lbs. I feel like he is growing way too fast.

Next, the nurses did an ECG on him, and he got to experience sucking on a pacifier for the first time. He was extremely overtired and was screaming bloody murder when they were sticking the little electrode thingies (not sure of the technical term) on him, so they gave us a pacifier with sugar water on it to calm him. He sure enjoyed that treat! I used to be a strictly "anti paci" person, but your kid's needs will trump your preferences as a parent every time. We're still keeping it only for emergencies like this, but I am definitely a pacifier appreciating person at this point. :-)

This is totally an non-invasive procedure, but it was hard as a mom seeing wires taped on my baby like this.
All I know about the results of this test was that they were good. Can't give details because I didn't understand 99% of what the nurses said, but his results were good. That's all I care about.

After that we went for an echocardiogram with the actual pediatric cardiologist. Long story short: Daniel had 3 holes in his heart when he was born: a PDA, VSD, and ASD (feel free to google for more info). The PDA closed, the VSD is almost closed, and the ASD (which was 4mm wide) has not changed at all. This isn't necessarily very bad; it is possible for Daniel to live with this defect for his whole life with no issues. There is a possibility it will get smaller or close, and this is what we are hoping for.

There is also a possibility that it will not close and will cause problems. If this happens, the defect can be repaired using a catheter-based procedure when he is 3-5 years old. This isn't even technically considered surgery. So it is unlikely we will ever be facing open heart surgery with our little man. This is great news!!!! And very very lucky for a little one with DS. We are following up again in six months to see if the ASD has gotten smaller at all, and will be checking every six months for quite some time to come.

This morning I had an appointment with my ENT (ear nose and throat doc) and was able to ask him a few questions about preventing ear infections with Daniel. Babies and children with DS are especially prone to ear infections and fluid in the middle ear. This can cause hearing loss, which in turn makes it harder for them to learn to speak and learn in general. We want to prevent this as much as possible. His advice was to continue breastfeeding and keep him away from other children as much as possible so he doesn't get sick. This is easier said than done when one has a busy older sister. :-) But we are committed to keeping Daniel home until he enters preschool at age three. Hopefully that will give him enough of a good start before he encounters all of those kid germs at school!

I also wanted to note that we did see Daniel's pediatrician last Friday to ask about his eyes. She confirmed that he does have nystagmus, but that it is on the mild side. She wants to wait until he is 3-4 months old to give his eye muscles a chance to develop a bit more. If he is still having issues then, he will be referred to a pediatric ophthalmologist. His heterochromia is benign and is just one more interesting part of him.

I hope my next post on the kids can focus a little less on medical stuff. I'm trying to keep everyone updated on the latest, but I hope you don't get the impression that our lives are all doctor's appointments and worries. We get lots of smiles and cuddles too. :-)

Until next time! Please continue to pray for good health for Daniel. Thank you.


  1. Lots of cuddles, if you are the MOM! Little preferential bug ;P I hope he knocks that off because I sure do like holding him.

    1. He is the snuggliest baby. I think as he spends more time around you he will grow more attached.

  2. Sorry to hear about Lily's party! Bummer but maybe there was a good celestial reason why it didn't work out .... I know it's a bummer but it helps me to think in those terms.

    Glad Danny-boy is doing so great! To encourage you, Noah had a hole in his heart when he was born (not sure which one...) and it took several months to close.... Which in mom-time is an eternity. Hang in there, Momma! God is Good! All the Time! Xo C

    1. I am glad to hear Noah's closed. I am really hoping Daniel's does as well and we can wave bye-bye to cardiologists forever!

      All the time God is good!