A Little Update

So we got some of the tests back and we are more confident now that he doesn't have cystic fibrosis or Shwachman Diamond Syndrome based on the levels of pancreatic functions they could measure, but the doctors will still not totally rule them out. He did another sweat test and his results were even better than the first time, which is good.

We are still awaiting many tests results and if he can get over whatever he has had for the past several weeks, he will be rescheduled for his CT scan of his chest at least. We are going to try to hold off on the one of his abdomen because they said that one is like getting 40 xrays worth of radiation and so unless we think it will give us some answers, we will not do it right now.

He is tolerating his night feeds a bit better, but we had to cut back to half because the full amount was just messing with his system too much.

He had actually lost some weight when we went to his doc for the post-hospital checkup, but he has weekly checks in the office coming up so we are hopeful he will show some improvements soon.

Jayden is still bordering on going back in the hospital right now though. His breathing is labored and we can only kick up his medicines so many times in a row before it becomes ineffective. Please continue to pray he can regain some steady health at least.

Ethan has been such a good big brother. He loves singing songs to Jayden when Jayden is upset about his treatments and kept rubbing his head to make him feel better. Ethan is getting quite excited about Christmas too.

Hope you all had a great Thanksgiving!

Read more...

We're Home

Well we're set up at home again:). We are really hoping the hospital visits are held to a minimal this year, but grateful they can do so much to help Jayden.

He will be on a feeding tube for at least a few months at night as well as eating normally throughout the day. He will then be evaluated to make sure he is gaining anything. If not, they will have to adjust his feeds and go from there.

He has follow-ups to see all the specialists and will hopefully stay well enough to wait to see them until those visits.

Not many of the tests are back so we'll hear over the next month results and maybe be able to figure out what to do to keep him healthy and help his weight.

We have a home nurse coming today to set up all his machines and meds and give us additional training so we will be pros at home.

Other than that he is a happy baby as usual. We are glad to be home in time for Thanksgiving and thankful for the wonderful support from our friends and family.

NOTE: We will not be coming into town anytime before the end of April at the earliest - at least as a family. It is just too risky to Jayden's health to travel and it's a risk we're not willing to take. We will miss everyone at Christmas and Thanksgiving and pray you all have a very blessed holiday!

Read more...