Sunday, December 11, 2016

Family Health Update!

I haven't done a health update in awhile, so I thought I'd let everyone know what's going on with everyone.


KIDNEY: Kanaan's kidneys are stable. We have switched to a new nephrologist. The "new" one that we had after Dr. Seifert left, was really pushing the Human Growth Hormone injections. Andy and I just really didn't feel comfortable doing them, especially as Kanaan is still growing, he's just short. Neither one of us come from super tall families anyway and there are a lot worse things in life than being short. We also felt, like he didn't really listen to us, and we just felt like we couldn't trust him 100%. When your child's life is in a doctor's hands you need to be able to trust him 110% and we just couldn't. We were able to switch to another Dr. in the same group there at STL Children's hospital,  Dr. Hmiel. We met with him in August, and loved him. He was great with Kanaan and even gave his Sesame street characters a checkup too. He agreed that Kanaan didn't need the Growth hormone injections and was also fine with having our pediatrician (who used to be a pediatric nephrologist) checking up on Kanaan's kidneys in between visits to him. So instead of us having to travel to STL every 3 months, we can go to STL every 6 months, and see Dr. Collins in Quincy at the 3 month mark in between STL appointments. We go back to STL to see Dr. Hmiel in September. Kanaan's labs looked good. His creatinine was stable, his phosphorus was low enough that we were able to discontinue the medicine he was on, and the other labs looked good too.
NEUROLOGY: Kanaan met with the neurologist a year ago in August. They said they didn't see anything that would indicate why Kanaan wasn't walking much at that point. He started walking right before we went to that appointment and they said if he hadn't been walking at that point they would have wanted to do an MRI, but they didn't see any other signs or risk factors for other problems going on, so they said it was our call if we wanted to do one. We decided not to, it wouldn't have changed the care for him, it just may have given an answer as to why he walked later, but may not have as well. We didn't want to have to put him through all of that if it weren't necessary, and since it wouldn't change anything if he did do it. We didn't do it.We went back in August to see them again. Once you see Neurology, you have to follow up with them once a year. This year at his appointment, the Neurologist said that they thought Kanaan may have something called "Ehlers-Danlos Syndrome" Which is a condition where the connective tissue is super flexible, it can cause problems with joints and the heart. They scheduled an appointment for us to meet to a genetics specialist, to determine
if they thought he had it as well.
GENETICS: We met with the Genetics Dr in October. Our pediatrician said she didn't think Kanaan had Ehlers-Danlos Syndrome, because it would be extremely rare for him to have 2 different, unrelated conditions. They Genetics doctor, looked over Kanaan and asked lots of questions regarding our medical history and Kanaan's pregnancy. She said she didn't believe that he had Ehlers-Danlos. He is super flexible in the joints and skin, but wasn't exhibiting any other symptoms, and we have no family history of it. She did say that they don't usually diagnose someone that young with EDS anyway, and we didn't need to go back to her unless other symptoms popped up or if we suspected Kanaan's kidney disease to be hereditary.
ORTHOPEDICS: Kanaan also met with the orthopedic doctor last winter at the beginning of the year as a follow up on his SMO braces. At that time he had been wearing them for about 6 months. They decided that he didn't need to have his SMO's anymore and instead has a shoe insert to put into his shoes. When we went back in August to see the Neurologist, they trimmed up the inserts a bit for us to fit in more of his shoes since we were at Shriner's anyway. We don't have to go back to see the Ortho until January.
CARDIOLOGY: At Kanaan's 3 year checkup his pediatrician heard a heart murmur, so she scheduled an Echo to be done to look into it. Normally it wouldn't be a concern, but since they were questioning the Ehlers-Danlos Syndrome, she decided to go ahead and have the echo done to have results for the genetics appointment. The test showed that Kanaan's Aorta is mildly dilated. The pediatrician said she has patients with it that do have connective tissue disorders (like Ehlers-Danlos Syndrome) and some that have this that don't have any tissue disorders either. We met with the Cardiologist Dr. Nicolas. He is from STL and Springfield and comes to Quincy once a month. When the nurse called to tell me the results she mentioned that usually for the first appointment you have to go to either STL or Springfield, but then can follow up at Quincy, simply because it's hard to get you in as soon as they need to see you in Quincy. Well when the cardiologist office called to let us know our appointment time, they had scheduled us in Quincy for mid November. Kanaan's echo test was done the very beginning of October. We met with Dr. Nicolas and he said that since Kanaan isn't showing any other symptoms or effects of the dilated aorta that we can just do another echo in 6 months. If it were still dilated then we may start a medication. He said it's something he could grow out of, but also he said not to rule out the Ehlers-Danlos completely, because a lot of the symptoms don't show up this young as well. He didn't seem too concerned about it since Kanaan is doing well and it doesn't seem to be bothering his daily life.
EAR/NOSE/THROAT: Kanaan had tubes put into his ears in May. He had several several ear infections last year and because of his kidneys, he has to have a lower dose of antibiotics to clear it up, which often is not sufficient to clear it up and we have to switch to a different one to try to clear up the infection. Antibiotics are hard on the kidneys, and Kanaan always spikes a fever and that also makes us worry about dehydration which can be detrimental to his kidneys. With the tubes if he were to get an ear infection we could put drops in his ears to treat it instead of antibiotics. The drops aren't filtered through his kidneys like the antibiotics would be so it would be easier on his kidneys to have the tubes. Tubes in his ears won't necessarily prevent him from getting ear infections, but it would be easier to treat once he did get them. His hearing tests came back fine, before the tubes, and the main reason we decided to go ahead with them was because of his kidneys and how hard ear infections are on his body. Since he's had the tubes put in in May, he hasn't had any ear infections at all. I'm not exactly sure off the top of my head, but I think this may have been the longest he's ever gone in his life without one. We still haven't had our followup from the tubes. He goes to a doctor in STL because of his kidneys and needing anesthesia, they wanted him to see a pediatric ENT instead of one here that doesn't specialize in kids. We've tried to schedule our follow up when we are already going to be in STL and it hasn't worked out yet. Which is why we haven't had our follow up. I'm not really worried about since, he hasn't had any infections since the surgery, and he passed the hearing test before the surgery, so I don't anticipate him not passing after the surgery. We have some other St. Louis appointments coming up so I am going to try to schedule a follow up when we are already going there.

I think that is all of Kanaan's specialists we see. He's battling some Croup now, but otherwise is doing good.

ANDY: In February Andy was hospitalized. We originally thought it was his gallbladder, but it turned out that his liver was inflamed, and his kidney function was at Stage 3. His liver function ended up returning to normal, and they determined he must have had some type of virus that attacked his liver. His kidney function, however, has not returned to normal. He had a biopsy in October, and that showed that his kidney disease is caused by sleep apnea and extra weight. He is working on losing weight, and had a home sleep study. The study did show that he has sleep apnea and will be getting a cpap machine soon to help with that. Hopefully this will keep his kidneys from getting worse, and maybe even improve some. We aren't sure if Andy's kidney disease is connected to his mom's kidney disease or not. If it is they said it is likely not connected to Kanaan's kidney disease, because Kanaan's kidneys were never normal, and Andy and his mom's kidneys were normal and then started to fail/failed. Which could end up affecting Eden even though her kidneys are completely normal right now. Hopefully her kidneys will never have an issue. Also this means that Andy cannot donate his kidney to Kanaan when he needs a transplant. On October 27th, Andy broke his ankle and foot. He fell on our front steps and broke a bone in the ankle and one on the side of his foot as well. He has been in a cast since November 1st. It is his right foot so he can't drive which has made things more complicated, as I have to drive him to appointments/work/home etc. He goes back to hopefully have his cast taken off tomorrow and they said he would have a walking boot for awhile after that. I'll be so glad when he is able to walk around again. I've been doing all the housework, childcare, and driving. Shuffling him and the kids around while trying to work 2 jobs and get everything done at home and everyone to all of their doctor appointments is a lot, I'm exhausted.

BRITTANY: Over all I am doing well. I did have to have my gallbladder removed in July, but since that has been done, I haven't had any trouble with that. I do have pre-diabetes, which was expected since Mom had type 2 diabetes and I had gestational diabetes with the kids. I'm on a low dose medication to help keep my blood sugar down, but otherwise am doing fine.

EDEN: Eden has a little cold right now, but otherwise is really healthy. She is rarely sick, and if she does get sick, she usually is fast to recover and doesn't seem to get it as severe as Kanaan does.

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