Tuesday, January 20, 2009

All Teeth And Nothing To Do With Them

Although we have posted a few journal entries lately, we haven't done a Sam update in a little while...

We are up to two teeth. I remember when Ryan was teething and what a nightmare it was. Sam is apparently not bothered by teething. He goes to bed at night with one tooth and wakes up the next day with two. No crying, no fussing. We are attributing this to his incredible tolerance for pain which has seemed to developed with his multiple pricks and pokes throughout his life.

Our calorie increase has helped us gain some weight and we are now just less than 15 pounds.

He is his normal happy self most days and his favorite thing is still his big brother. We have not made any progress with crawling, but Sam is starting to get around. It is a little scary when you turn your back for a minute and he has rolled halfway across the room and is at the end of his line.

Things are also not progressing with eating. Sam will take food in his mouth and his oral aversion is better, he just won't swallow food. He is happy as can be with a Ritz cracker. He breaks off pieces into his mouth, pushes them around, and spits them out.

Thanks to a few people we are getting a little relief. We are going to work hard over the next few months to get Grandma and Gramps comfortable with Sam's care so that they can watch him when they are up to it. We also have started the process to (hopefully) get approved through Medicaid for some private duty nursing. For now we have received a generous gift from the members of Artistic Threadworks which will help us cover some private duty nursing each month and we have found a nurse to help us out for a few hours each week who we are more than comfortable with. (THANK YOU SHERRI) Sheri took care of Sam in the NICU and spent quite a few hours with him when he was first admitted. She is also helping us get all of the paperwork in order to apply for private duty nursing through the state - any help with red tape is always appreciated.

That is really all of the news we have for this week. Thank You to everyone who sent letters and emails on Emerson White's behalf, her story has been picked up by several media outlets and the state is now working with her family to help them come up with a solution.
Although we have posted a few journal entries lately, we haven't done a Sam update in a little while...

We are up to two teeth. I remember when Ryan was teething and what a nightmare it was. Sam is apparently not bothered by teething. He goes to bed at night with one tooth and wakes up the next day with two. No crying, no fussing. We are attributing this to his incredible tolerance for pain which has seemed to developed with his multiple pricks and pokes throughout his life.

Our calorie increase has helped us gain some weight and we are now just less than 15 pounds.

He is his normal happy self most days and his favorite thing is still his big brother. We have not made any progress with crawling, but Sam is starting to get around. It is a little scary when you turn your back for a minute and he has rolled halfway across the room and is at the end of his line.

Things are also not progressing with eating. Sam will take food in his mouth and his oral aversion is better, he just won't swallow food. He is happy as can be with a Ritz cracker. He breaks off pieces into his mouth, pushes them around, and spits them out.

Thanks to a few people we are getting a little relief. We are going to work hard over the next few months to get Grandma and Gramps comfortable with Sam's care so that they can watch him when they are up to it. We also have started the process to (hopefully) get approved through Medicaid for some private duty nursing. For now we have received a generous gift from the members of Artistic Threadworks which will help us cover some private duty nursing each month and we have found a nurse to help us out for a few hours each week who we are more than comfortable with. (THANK YOU SHERRI) Sheri took care of Sam in the NICU and spent quite a few hours with him when he was first admitted. She is also helping us get all of the paperwork in order to apply for private duty nursing through the state - any help with red tape is always appreciated.

That is really all of the news we have for this week. Thank You to everyone who sent letters and emails on Emerson White's behalf, her story has been picked up by several media outlets and the state is now working with her family to help them come up with a solution.

Tuesday, January 13, 2009

Omegaven In The News

We just wanted to share with everyone an article from the front page of the Boston Globe about Ellie Brogan and her Omegaven journey. Ellie's website was one of the first that we found after Sam was diagnosed with Microvillus Inclusion Disease and reading her parents journal entries were what convinced us that going to Boston was what we needed to do.

Thank you to Abby and Gib Brogan for getting Ellie's story out there for other parents to find and helping to continue to spread the word about the miracle we, and many others, have experienced with Omegaven.

Read the article here:

http://www.boston.com/news/local/massachusetts/articles/2009/01/09/old_fashioned_lifeline/

Friday, January 9, 2009

Back Just In Time

Sam and I made it back to Wisconsin today, just ahead of another snowstorm in Boston.

We had a very good clinic visit in Boston this week. Everyone is impressed with the progress Sam is making. His weight gain has slowed to almost nothing, which is of a small concern, but they will be boosting his calories to try to get him to start gaining again. Due to a mix up at the clinic, we don't have lab results for Sam; we will have to have labs drawn here next week to see how they look.

This coming week we will get to increase Sam's unhooked time from 5 hours to 6 hours. They want to keep pushing Sam's unattached time up an hour each visit and surprised me by telling me that they believe that we can probably get Sam up to 12 hours off eventually. I will believe that when I see it, that just seems like an awful long time to have no fluid or nutrition going in.

We have been experimenting with Sam's reflux medication over the last few weeks and it is going so well that they will be adding it right into his TPN bag for us so we won't have an extra medication to give him every 12 hours.

We had a very nice trip home today, Sam and I got bumped to first class and Sam took full advantage of the extra room by sleeping for the entire flight from Boston to Milwaukee.

Tomorrow we will be traveling down to celebrate Christmas with my mother's family. No time to catch up on rest, but that is in the works and we have received some help with getting some respite care into our home (hopefully soon) to give us a little break. Maybe we can finally find time to finish moving in and get the house clean...

Saturday, January 3, 2009

Happy New Year!

What a busy few weeks we have had!

We managed to spend Christmas day at home with no major incidents and no time in the hospital. Sam really didn't know what to make of the presents, but he enjoyed the wrapping paper. I think we would have saved a lot of money if we just would have given Sam paper for Christmas, it was his favorite thing. Ryan's favorite things seem to be Sam's toys, but only when Sam is playing with them first.

We spent a relaxing day at home for Christmas; we didn't even take the time or energy to shovel the driveway. Jason paid dearly for it the next day though when we got 4 or 5 more inches of snow on top of the 3 or 4 inches that were already in the driveway. But Santa left many presents and it was so warm in front of the fire.

We spent the Saturday after Christmas at Grandma and Gramps house. Saturday morning gave us a little scare when Sam's TPN became disconnected from his line. Deb went to set him down on the floor and noticed blood seeping through his clothes. Since we had just finished cleaning him up from his nightly poop-o-rama we were very worried about a line infection. Sam was very warm that afternoon and we were preparing to take him in to the hospital when we got back to Appleton. By the time we got home, no fever and everything was back to normal. It looks like no dirty bugs got in the line.

Another relaxing day, although loud (which is typical for Jason's family gatherings). We may have to post the video of Tanya, almost halfway through her pregnancy, hula hooping on Wii Fit. It is really hysterical to watch each other hula hoop with no hula hoop.

It was nice for all of us to get to spend the entire day together, and Sam had his first tooth break through his gums that day!

Today Sam is ten months old! At times it feels like the last 10 months flew by - other times it feels like Sam has been around for 10 years. When we look back on the last 10 months it is so amazing to see him so healthy, learning, smiling, laughing, and starting to move (we are not prepared yet for Sam to be mobile so he can feel free to take his time on this).

We were also happy to learn this week that we have gotten our home nursing care back. This is at least enough so that we can have our nurse come in every week and do a quick check up on Sam, help with dressing changes, get his weight, and we can do our monthly labs at home instead of having to haul him, and everything that goes with him, into the hospital. We are still in need of a break and are working on trying to get some respite care here once a week.

2009 is staring out with many positives and we hope we can continue to keep Sam healthy while keeping our sanity this year. Jason heads to Boston on Wednesday with Sam; hopefully we can keep the snow storms between here and Boston to a minimum next week.