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.
Sunday, December 11, 2016
Tuesday, November 29, 2016
On November 2, Eden turned 2 years old!!
Eden weighs 24lbs 8oz and is 33in tall.
She can sing the ABCs, Twinkle Twinkle Little Star, Jesus Loves Me, and Happy Birthday.
She is no longer in a crib, and is doing well in her "big girl" bed. She does go into Kanaan's room when she wakes up.
Eden is wearing 24M/2T clothes and size 6 shoes. She wears size 4 disposable diapers and Large rise in cloth diapers.
If we ask her if she is a cutie pie she says "No, Tootie Pie" it's so cute.
Everything is "My do it"
Some of her favorite things are "Hair Bears"(Care Bears), Paw Patrol, and Doc McStuffins.
She is full of attitude and sass. She has two care bears that talk "Grumpy Bear" and "Cheer Bear" I told Andy her Care Bears match her 2 mood options. She is usually one or the other. If she's particularly grumpy, food or sleep usually makes it better.
She likes to have her hair done and a bow put in. Although she usually takes the bow out in the car if we go anywhere.
She can undress and dress herself. Often, when I go in to get her up from nap, she has her shirt on backwards or pants inside out. She also will take off her diaper.
For her birthday she got a grocery cart and she calls it her "car seat".
She loves Pogo a ton. Pogo mostly just tries to stay as far away from her as possible, unless she is eating. But, she is learning to sit still and pet Pogo, so he is beginning to tolerate her.
Kanaan is her best friend. They are inseparable. If she falls out of her bed she cries "see Kanaan" and will run to his room instead of ours. I had to take Kanaan to a doctor appointment and she stayed with Andy. We were gone for about 4 hours and they both laughed and hugged for about 5 minutes as soon as we got home.
I bought a new candle this month and set it on the counter to light later. The next day I couldn't find it and I searched all over. The next day I found it in the bottom of the trash can with bite marks out of it. Apparently, Eden must have smelled it and thought it would taste good. Took a bite out of it, decided it was bad and then threw it away. Now when she see it she says "Mommy's candle right there. Don't eat Mommy's candle, it's yucky. Mommy's candle gets hot"
She has 3 pairs of shoes she prefers to wear, gold sparkly flats, Pink and silver sparkly flats, or black boots with sparkly bows on them. Sometimes when I put her tennis shoes on she will take them off and put on one of the other pairs. Then she cries and cries when I have to switch them back.
Andy broke his foot, so she is obsessed with owies right now. Several times a day she says "Daddy hurt his feet" "Daddy has owie on his feet" She also claims she has an owie on her finger all the time. Nothing is wrong with her finger, she just wants you to kiss it.
She is such a firecracker and we love her so much. I can't believe we've had this spunky, fiesty girl for 2 years now!
Monday, November 28, 2016
On 9/3/16 we had Kanaan's 3rd birthday party. This year he wanted a Sesame Street Party. We had a party at the park.
I made Elmo cupcakes
And Cookie Monster Ice Cream
Aunt Kayla made all of us Sesame Street Character T-Shirts and Tutu skirts for the girls. Kanaan picked the characters for each person.
We made tissue paper pom poms into Sesame Street Characters. It's hard to see but Pink=Abby Cadaby; Red=Elmo; Purple=Count; Green=Oscar; Teal=Rosita; Orange=Ernie; Yellow=Big Bird; Dark Blue=Cookie Monster
All of our outfits. Kanaan=Ernie; Andy=Bert; Me=Cookie Monster; Kayla=Elmo; Eden=Abby Cadaby
Juice and Water
They got a swing set from Nana and Papa. I need to take a picture of it all set up.
Last night going to bed as a 2 year old.
He got a big boy bed from Mom and Dad
First night going to bed in his new bed.
Saturday, September 10, 2016
Kanaan turned 3 years old on 9/4/16. How is he 3 years old already?!
He weighs 25lbs 8oz and is 34 inches long.
He wears 24M and 2T clothes, although the pants fall off him, he needs them for length. In shorts he can wear 12M or 18M perfectly.
He wears size 5 shoes.
Kanaan is in size 4 diapers.
He loves to sing: "Happy Birthday", "Farmer in the Dell", "Twinkle, Twinkle Little Star", and "ABC" are his go to songs.
He now has a radio in his room, that he likes to turn on and off, throughout the day.
He really likes Sesame Street, Veggie Tales, and Paw Patrol. Although he doesn't really watch Paw Patrol he like Paw Patrol themed stuff.
Sometimes when he does something he will tell himself "Good Job doing it yourself" LOL.
He can spell his name verbally.
Some of my favorite "Kanaan Phrases" are: chicken for Kitchen. being "too heavy" He will say I too heavy to reach it, or he's too heavy to get on something. He adds Probby for probably to things, he said "you probby a boy mommy" I said " I'm probably not a boy" He said "you Probby are a boy mommy" (He knows the difference between boys and girls, and knows that he and Dad are boys and Eden and I are girls). Sometimes if I tell him no for something he will say "you DO want ..." He will sometimes refer to himself as you or sometimes I. He also says "to later" instead of later, because you know we have today, tonight, tomorrow and he thinks it's tolater.
He thinks anything pink or purple is automatically Sissy's.
He is doing good with working on using a fork and spoon to eat, but he still uses his hands a lot. He also rubs his legs and feet while eating so he is usually covered head to toe in food after he eats.
He has graduated from Physical Therapy, and can now jump and run. He keeps getting better at it.
He loves to do puzzles and read books.
"Llama Llama" books are his favorite.
We switched him to a toddler bed the day after his birthday. He wanted the rail back on his crib at first, but then was ok in the "toddler bed". He fell off once the first night and hasn't since. He also will not get out of his bed, until we come in to get him out.
He likes to stack the canned goods, and knows what most of them are. (We still don't have doors on the cabinets so he reaches them easily.)
He can go up and down the small slide we have at home, but otherwise he doesn't like other playground equipment, like swings or bigger slides.
He talks constantly, I mean really non stop.
Eden is his best friend, and he is lost if they aren't together.
He is very excited about being 3 and thinks Eden is automatically 2 now.
He still doesn't like loud noises, but is getting better. He will tolerate me using the mixer, but is still afraid of the vacuum.
We love you so much Kanaan, and can't believe you are already 3!