Updates

Matthew has kept us on our toes the past few weeks. For the first week home, we worked very hard to tweak Matthew's meds, as he started retching again after we got home. Not having reflux has helped dramatically, but Matthew is very accustomed to retching, and it's a learned behavior for him. So if he gets air in his belly, it makes him retch, and the same with if he has too much saliva in his mouth. We are slowly but surely getting things better for him. Even with the retching he is doing now, he is still way better than before. The surgeon also said that this is a six to seven week recovery. We are only 3 1/2 weeks in, and in that respect, he is doing phenomenal.

We have had a lot of appointments the last couple weeks, trying to catch up with all the appointments we missed due to being in the hospital. The rest of this month will be busy with Dr. appointments, too.

Last week, we saw the eye doctor and the dentist. The eye doctor says his eyes are a bit better and was able to tell that Matthew was tracking on the left side. He says that CVI (the type of visual impairment Matthew has) is difficult to tell how much vision Matthew has. Matthew's eyes are normal; but the way his brain interprets the information is why he is visually impaired. Since he is unable to tell us what he see, we are only guessing what his vision is. The eye doctor told us we don't have to come back for 2 years. 2 YEARS!! One less appointment we have to keep.(leaving his eye appointment, wearing disposable glasses because his eyes were dilated)

His dental appointment was pretty uneventful. He didn't appreciate having anything or anyone in his mouth, but she was quick. We will revisit in 6 months; just like normal.

Today we saw the urologist. He reviewed his kidney ultrasound, and said everything looked wonderful. He said...wait for it.... that we DO NOT HAVE TO COME BACK!! He said that he will send a letter to Matthew's pediatrician to tell her to make sure and do a kidney US with him every year, and if problems arise, he would be glad to see him again. That was wonderful news to us! Matthew has enough doctor appointments and I would love to get rid of a few. We love this urologist too. The first urologist we went to see wanted to put Matthew on all kinds of medication, and run all kinds of tests. The medication he put Matthew on made him unable to empty his bladder (this was when he was a tiny baby...6 months or so) and he wanted me just to cath him the rest of his life. When we took him off the medication, he was fine. The medication was to help lower the pressures in his bladder. Our new urologist, however, said that ALL babies have high pressure bladders, that is why they "go" so frequently. Over time, they learn to control their bladders. And he was right, Matthew has been just fine, and did not need all of that intervention. His only urinary problems have been related to his tethered cord.

I remember when a lot of our hydro friends were so excited about appointments getting fewer and farther between, and was bummed because it wasn't that way for us. I think we are maybe starting to see our reprieve. And boy, does it ever feel good! We want Matthew to live as close to a "normal" life as he can; one that is not spent in hospitals and doctors' offices.