Twins are 22 Months!

 Enjoying one of their favorite activities - snacking!

On Christmas Day, Brett stood up without any assistance whatsoever for the first time. He was so proud of himself, and so were we! On New Year's Day he actually took a couple of steps. He can climb the stairs but he can't yet get down. He can also push a walker toy.

They are really beginning to progress developmentally. They both use signs to convey their desires, use signs for various objects around the house, and have some adjectives as well. Both boys are also putting signs together to express themselves more clearly, such as "help, please" or "more water please".

We have taught them baby signs for many words they need to communicate but can't yet say, such as "more", "help", "please", "food", "drink", "hot", "dirty", "gentle", and "outside."








Both boys have words such as "hi", "bye", "dada", "mama", "hot", "cold", "yum", "shoes", "down", "whoa", and "wow." Whenever any sports program is on TV - football, hockey, monster trucks, and even golf, they both start yelling "GO!GO!" But the word both of them say the best is "NO!" And they say it to each other all day long sometimes!

They get along all right half the time, and the other half they seem to be fighting over the same toy, etc. Gantt uses his strength to take things from Brett or hit Brett or put things where Brett can't get them. I guess it's normal, but we are trying to curb that behavior, of course. Sometimes they will play side by side or just talk to each other, and those times are wonderful!

One thing they love doing together is rocking in the chair. It's fun to watch them do that.

*Breathe*

This is a photo of Brett when we were in the waiting room at UNC for clinic last week. He was seen by his pulmonologist, Dr. S, and got a good health report! The main thing is that we are finished with IV antibiotics!! Since December 17, either we've been IN the hospital, or on home antibiotics.We are so happy that not only does Brett not need them anymore, but we are also so tired of having to administer them every 6 hours. That's round-the-clock, even at 3 and 3:30AM.

Weight: The same. About 21 pounds and 7 oz, or 9.55  kilos. The great thing is that he was able to maintain his weight throughout the last couple months of illness! The not-so-good thing is that since he hasn't gained any, he is still sort of on the brink of a nutritional "crisis." Do you remember way back when I blogged about trying new formula? That didn't actually end up happening after we found out the extraordinary cost of the formula. Even with 2 free cases a month, it was still going to run us $800-1000 a month. We wanted to try every other option we had first. At last week's appointment, we discussed at length the different options we might have - with the doctor, social worker, nutritionist, and special infant care coordinator all in the room. 

I got some names of foundations and agencies that help people that have children with extraordinary medical needs. But the best thing was that since we switched insurance on January 1, the new insurance plan will PAY FOR THE FORMULA!!! Also, our home health company provides it, so they will bring it to our doorstep every month without me having to remember to get online and re-order, the way I've been doing. Also, it comes in pre-mixed bottles! I've been mixing formula for almost 2 years now! By the way, though, I will be finding somewhere in North Wake that will take #5 bottles for recycling - we will be using over 200 bottles a month!We are so excited to be able to try this formula and needless to say, we have high hopes for this stuff! 

Venous Access: PICC line was removed in clinic on Jan 18. Brett has no IV access now.

IV Meds: IgG (immunologlobulin infusion once a month)

Deep Pharyngeal Swab: Culture on Jan 18 -No information yet

Next Appointments: 

February 11 - IVIG infusion

February 18 - clinic (pulmonology & gastroenterology)

March 1 - immunology