Since I am a little slow at getting updates on here, this will be a good catch up post. Josh hasn't had many doctor appts, but getting all of his meds switched from wal-mart and Shopko to WalGreens has sure taken a TON of time. Very worth it, but still very time consuming.
The only appt Josh has had recently was yesterday at PCMC. He had his Dysphasia, or Feeding Clinic bi-annual appointment. And to tell you the truth I am still reeling from all that has come from that.
If there is one thing that has helped me survive all the medical issues going on in my house, it's the fact that Josh is doing well. His last appt in April, he was doing spectacular. He FINALLY was exactly where they wanted him for weight to height ratio, and BMI, ect. I guess that probably gave me a false sense of security with him and I have not been as vigilant as I usually am. He still had his bloated tummy issues, but Dr. O'Gorman said we would give him another 6 months to see how things were going. That was the only concern.
So much to my surprise, Josh has taken a dive in his health and I was a little shocked. He has lost a pound since his appt in april, and has not grown at all, not even a millimeter since that appt as well. Dr. O'Gorman is more worried about the lack of growth than the weight loss. It means he is seriously lacking calories and lack of growth is really worrisome. His tummy bloating is not any better, in fact it has been a tad worse. She thinks that milk is still the problem with his motility and bloating. She said she is pretty sure his intestines are swollen inside and making everything worse. Since we have run every blood test, he has been scoped, had biopsy's, ect...there really isn't a reason to repeat any of that. But we are once again taking milk away. He has been back on milk for over a year, so we can't remember what his bloating looked like before that. So it means another change in formula, as well as adding calories and water. Pretty much Josh is back on his pump 24/7 again. I will only let him off of it for school. Let me tell you how excited I am about that. :(
So.... we will have to go back in 3 months. It has been 2 years since we had to do every 3 month appts. Let's hope it doesn't become a permanent thing.
Here are some pictures of our funny boy. Sorry for the quality. I took them on my phone so they aren't the best. But it's all I take these days....
I woke up to this one morning. How can you not laugh at this boy?
Now for my baby girl. Wow had Kaitlyn had a rough few weeks. From catching a cold and ending up back on oxygen again, to her GI appt and 5 visits to her ped in two weeks, she has about had it. I wish things were easier on her.
We did one more trial run on Amoxicillin since she couldn't get over her cold. She is definitely allergic to it. Now we know. She also got yeast infection that continued to get worse even with cream. She woke up with thrush in her mouth 4 days later. We were back to the Dr. AGAIN and got a new cream and oral meds for the thrush and yeast infection. Due to a mix up with insurance it took over 5 days to get the meds. She was miserable and her mouth was sore for days. It was not fun. She had a GI appt this week as well. She has maintained herself on the growth curve, but she didn't increase... so she is still not where she has been all along until her drop off last appt. She is scheduled for a PH Probe test on Dec 1-2. It's a 23 hour test that measures her reflux. If it comes back moderate enough, we will then meet with a surgeon about whether or not she is a candidate for surgery with her low tone. I am choosing to not think about that yet since it scares the crap out of me. The Nissen is major surgery. So I would rather not think about it. We also got the official NO on milk and soy for her. So thank goodness with her Feeding delay we are still on single fruits and veggies. We aren't going to make any changes until we get the results back from her PH Probe. And then she also had a sedated MRI scheduled for next week. This girl is keeping me so busy!!!!
As far as therapy goes and how she is doing...... she is eating the stage 2 pureed foods and doing well finally. She doesn't gag anymore and swallows nicely. We aren't going to do anything at this point until we can get some results back. She will continue to get her full 5 bottles a day of formula with not weaning anytime soon. She is walking slowly around furniture but not taking steps forward at all. She can kneel, but not sit flat on her bottom. She is a tad more stable, but still has some low tone issues really causing problems with her trunk control. We will just keep on keeping on with her.
And here is a couple pictures of her as well. I am not sure why I have so many eating pictures, but oh well....LOL!
(PS... Is anyone else having problems with Blogger?)