Con Santo y Seña: In a Nutshell

It’s been quite a bit since I’ve posted and so much has been going on, I’ll try my best to update you.

PART 1

Late November Natalia was doing awesome, she was mastering sitting w/o support, and this was her favorite activity: Mirror play!!!

Then suddenly one day she stopped tolerating her feeds, I slowed her rate down all the way to 40 /hr but she still has ghastly stomach cramps and seemed to be producing A LOT more gas than usual. She would scream in pain and jerk all around, these fits lasted about 40 minutes and I believe that she just got so tired she slept even with the pain.

After one day of this she got a slight fever, I called her Ped and she told me to go to the ER just to be sure. And, as Murphy ’s Law is, Natalia was fine during the ER stay. She was even LAUGHING!!! I couldn’t belive it. We were there for around 5 hrs and they finally decided to discharge us, I was so frustrated because I knew that she wasn’t all well. When the discharge papers arrived I started to dress Naty to go home before I signed them. And then Natalia started having a fit. I mean, it took 2 nurses to hold her down and she’s tiny!!. Thankfully one of the Doctors was there and saw just how terrible her pain was, they admitted her immediately.

Our hospital stay lasted 1 week; she got better very slowly because this time nobody could, by ANY means, get a line in her tiny veins. All her meds were via gtube. She was very weak but finally after 4 days her blood culture came back negative so the game plan changed and they stared weaning her back to Nutren Jr.. that took another 3 days. In the end we were discharged with her feedings at a very slow rate, no solids and a case of c-diff.

We had her 15 month well check 1 day after her discharge: 14.7 pounds and 26 inches. This puts her well above the 50th% in the cdls growths charts.

We also had an appointment with her GI doctor, who was happy with Natalia’s recovery but still ordered an upper GI and a swallow test just to double check that her Fundoplacation is holding up consistently. I’m glad she’s having those studies done again since I know how important gastric & swallow issues are with CDLS. These are going to be in Jan 08.

A week after she was discharged we also had an appointment scheduled with the pulmonologist to try to get the synagis shot for her.. By then Natalia had the sniffles an a slight cough. Everything went great with the pulmonologist, she said her lungs look great but still authorized the synagis. When we asked about the cough she said it was just that: a cough. And just as things usually go: the day after that appointment Natalia started to have this whooping cough that made her cry every single time. This lasted another week, and is finally dying down. She still has a cough, but definitely the worse is over. We can finally both sleep. :)

PART 2

MERRY CHRISTMAS!!!

Both my brother and sister came to visit for the holidays. We seldom see each other since one lives in NY and the other lives in Wisconsin. Their presence made this holiday very special. My brother stayed only for a week, he left just before Christmas. I'm glad he and Gaby (his wife) had the chance to get to know Natalia. We're a pretty close knit family and if there is something I would love is for my brother ans sister to know just how lovable and teriffic my baby girl is.

This is my brother Elias and his wife Gaby with Naty in her PJ's

My sister is still here with her family, she has adorable twin 4 yr olds who are pure dynamite! They are tons of fun. They love to play and cuddle with Natalia, and she enjoys the atention. I think it's time to think about giving Naty a brother or sister, she enjoys other kids company alot!