Home care extended

We knew that sooner or later the at-home nursing would end. Today was that day. Christina put up a really good fight and got a 13 week extension. The great thing about the extension is that it brings us closer to the 18 months Jacob needs to be enrolled into UCP Nassau. Jacob is looking healthier by the day - he is turning into a little cherub. His eating habits are improving daily thanks to the nurses and therapists. Tuesday was Cheryl's last day with Jacob and her help with the feedings will be sorely missed. His other nurse, Daphne, was telling me that she was getting Jacob to stand on both legs for about 15 seconds at a time today. This may not sound like much but remember that he is partially paralyzed. This is a very positive sign that his brain is trying to "rewrite" his nervous system. The twins have been a little under the weather this week but nothing serious. Corinne has congestion and a cough and Jacob has been vomiting occaisionally. Christina was a little sick too. It has been a blessing that things are calm with Jacob and there have been no emergencies.

Happy First Birthday

One year ago today we were blessed with the arrival of Jacob and Corinne. I can hardly believe that it has been one year already. Sometimes it feels like an eternity has passed and other times, only a few days. There has been a lot of stress and many emotional upheavals and I am sure that I have aged more than 365 days this year. People still say to me, "I don't know how you guys do it." You know what, neither do I. Sure, its tough, but there are plenty of rewards as well.

FOOD FIGHT!

In a previous post I mentioned that feeding Jacob by mouth was challenging. I was wrong. Running a marathon is challenging - this is next to impossible! Every bite is a struggle. He winds up wearing most of his food. Christina seems to have the patience that I am lacking for this. If it were up to me, he'd be getting formula via the g-tube until he was old enough to buy food on his own. I am saying this out of frustration of course, but seriously, I was not expecting this. We have had a blessing in one of his nurses. Cheryl is a feeding specialist and she really knows her business. Jacob has come very far with Cheryl as far as eating goes. While I still lack the patience, both Christina and Cheryl can feed Jacob an enitre jar with relatively little bloodshed. When Daddy has to feed Jacob, there will be tears - and lots of high decibel screaming. OK, so after I stop crying and screaming, Jacob usually gets about half a jar of food down the hatch and a fresh change of clothes. We have cut back on the nighttime g-tube feeding so he is hungry when he wakes up. This has actually worked out pretty well. For the last few days, he has been eagerly awaiting his breakfast. Its still a mess, but this is a positive sign. Cheryl has been teaching us all of the tricks. He does really well when he is distracted. If we distract him with Wonder Pets (his favorite show) he doesn't put up much of a fight. With the aid of Cheryl and the patience of my wife, maybe I will see the light; until then, practice, earplugs and a large drop cloth.