So sorry to have left the last post hanging...I can't even begin to explain the chaos our family has been in the past week. Joseph had such horrible diarrhea...and we just couldn't find anyone to really look at him from a whole person standpoint and help us to help him feel better. Its been awful. Joseph is amazing...and we love him dearly...but trying to get a pediatrician to really care about his unusual circumstances and give him some real care has been so hard. He deserves better than what he has been getting.
I wrote a very long post describing ALL that we've gone through in the past several days...and it got so lengthy, I decided to just scrap it. The bottom line was that we were giving Joseph care that was recommended by an excellent nurse at the childrens' hospital but she really wanted him to go to the pediatrician again anyway because of his size and situation. And the pediatrician completely dropped the ball. She thought we were crazy to be feeding him pureed foods and told us to just feed him starchy food to help stop the diarrhea.
Our little guy is only 21 pounds. And he won't drink. I left the office crying. I had begged the Dr. to care....to take this more seriously and she didn't. She actually called us at 9pm that night to say she had gone home and "couldn't get Joseph out of her mind" so she had done some research and learned more about re-feeding syndrome. She wanted to test his electrolytes to make sure that he wasn't suffering from that. Continual malnutrition combined with being fed nutritious food can cause re-feeding syndrome and it can be fatal.
Long story short...we ended up getting into an appointment with the geneticist and specialist Dr. at the childrens' hospital....thank God they had a cancelation because it takes quite awhile to get in there. Joseph has had a bunch of labs run to test for different things, x-rays and we're waiting on referrals to things like audiologist, cardiologist etc.
Joseph stopped having diarrhea...but now he is on day 4 of not having a BM at all. That isn't good, either. We're going to work on some things this weekend and he's scheduled to meet with a GI/Nurtritionist next week. He cries at every meal and I am so incredibly afraid that we might feed him something that causes even more of a problem for his little body.
The childrens' hospital was good. But they made it very clear that we really need a good pediatrician for Joseph's regular health issues. And right now, we have a Dr. that doesn't seem to consider him worth the effort. She sees Down Syndrome and can't seem to see anything more than that. Joseph needs someone that will treat him as a whole person and take their time figuring out what he needs.
If you could say a prayer for Joseph and for our whole family. In the midst of Joseph's poor health, lots of Dr. appointments (many of which have been very upsetting) we've also had a record breaking amount of rainfall here and it seems to have wrecked our septic system and leach field. We are unable to use our showers/sinks/toilets right now at all. And there is no solution as of yet. We might just need to wait it out till the ground dries out....and the prediction is for rain all of next week. We might need to move somewhere temporarily. It's one of those situations where you just need to choose to laugh instead of cry!
The evil one is trying so hard to discourage, stress and wear us down.
But we know better.
God is Good.
ALL THE TIME.
Even with our house in shambles right now, we have eachother. And we have Joseph. And we love him dearly.
This little boy is amazing. And I am so thankful that he is finally home with us.
So we continue to press on and try to get him the care he needs...and offer up all our difficulties for some dear people we know in need of our prayers.
Pray for Joseph's little tummy. We just really want him to be happy and healthy.
We know God has so much goodness in store for him ;)