I know I have been MIA for a long time. We've been doing a lot lately. So by request, (and because I am home with strep and it's quiet naptime...) here's a much needed update on our family!
Mom and Dad (aka...me and Kris)
We've been doing very well. Last week, we celebrated our 6 year anniversary. I can't believe how much our lives have changed in the last 6 years. Oh how naive we were then. Up until that point our only bump in the road was the miscarriage of our first pregnancy. Don't get me wrong, it's was hard to swallow but we both see now that we were no where ready to be parents at that time. It was an eye opener for sure. Now fast forward 6 years....we're still having fun and full of love for one another. We celebrated our anniversary with our beloved Brewers. Just me and him. We got to hold each others hand instead of our 3 pairs of little hands. We had fun, just the 2 of us. We don't take enough time for us. We were starting to forget that we can have a conversation that didn't get interrupted or was about our 3 loves. We discussed them plenty on our trip and missed them dearly. I can't even stomach the thought of us in 15 to 20 years when our 3 kids are growing up, making their dreams come true, being a little naughty...and it's just me and Kris, what in the world will we do?! Right now these rare times of "us time" is super rare and super special.I am battling with strep, sinuses and eczema. I have a very mild case of eczema on my neck, ear and ear canal. This morning I had to have my plugged ear flushed of pus and gunk from eczema gone bad. It hurts and irritating. My throat is raw and my head is full. This is the 4th time that I have had sinus infection and strep throat together in the last 6 months. It keeps coming back. I want it gone and stay gone! I am really tired of buying new toothbrushes!
Troy Thomas
He's is doing very well. He's very sensative. Dad just left for work and Troy was very sad, with crocodile tears and all when he left. Troy's vision is doing very well. He is down to 20/40 in his left eye. This means that if something, God forbid, happens to his right eye, he can legally drive unrestricted. Score! He is greedy for knowledge right now. He loves to do work books, educational computer games and writing. He holds the pencil funny but no matter how much we correct him, he still holds it wrong. Hopefully, Mrs. O can help out with that in 4K next year.
Weston Robert
He had surgery on February 20th to straighten both of his eyes. And it worked...for a while. He continues to favor his right eye over his left. I am not exactly sure at this time what that means for the future but right now he has glasses and wears a patch over his right eye for 2 hours a day. He growing well. I am just smitten over this little boy. I absolutely adore his giggle. He keeps it locked in pretty tight but when it comes out, it's so darn cute! He's right on cue for his size for his age. He loves to be outside! He loves to color and "write" (at the mercy of whatever he can get some ink on...ie his legs, arms, my Kindle cover, important papers, every page in a book, the couch...)! Knock on wood, he has yet to color on the walls like his brother preferred! His speech is very sparse. Almost non-existent so Bto3 maybe coming back to the Klauer household for him! Just KrisAnn! We went on a weekend vacation with Kris's family the first weekend in May. We ending up making a very impromptu trip to the ER after Weston's forehead kissed the hearth on the fireplace. They glued him up, got us some antibiotics for a stray ear infection and sent us back to the Lodge.Rylee Marie...this one is last because it's the longest, as usual!
Rylee had surgery on February 20th as well, but just to have tubes placed to drain fluid on her ears and hopefully curing her conductive hearing loss that she had been having. Those tubes drained the fluid but did absolutely nothing for the hearing loss. Late May, she was diagnosed with mild to moderate Conductive Hearing loss. The ENT doctor and audiologist are a bit confused as to why she has conductive instead of a nerve type of hearing loss because it's more common for preemies to have the nerve form. 99% of the time, tubes cures conductive hearing loss when there is fluid present on the ears. Well she is the 1% exception. There are tests that we could do to maybe determine what is causing this which starts with a CT scan. She has had a lot of radiation in her short little life so we decided to not pursue the test and move forward. There would be no immediate outcome of the CT scan and nothing we could do with the knowledge right now anyway. Therefore, we are going pursuing hearing aids. If later in her life, she wants to explore this issue, she can decide that then. We ordered a very nice pair of baby pink hearing aids with light pink glittery ear molds. She can not have bone anchored hearing aids because her bones aren't strong enough yet. But mainly because she has a shunt tubing running down behind her left ear right where the aid would go and on the right side she had staph, MRSA, very close to where the aid would be. So she has pretty pink digital aids. We are very very hopefully that these hearing aids will help tremendously with her speech. Fingers crossed.
Rylee finished school on May 30th. It was the hardest decision to make to send her 4 days a week for 3 hours to a school that is 10 minutes from Dad and 30 minutes from me but we did. And it was the best decision we have ever made! She has blossomed so much. Her speech has taken off. Though still get a lot of jibberish but we can usually justify what she is trying to tell us. Her pretend play is out of this world. She loves to have tea parties. God help her brothers! Within 2 weeks of starting school, Cheri (her teacher) started potty training her at school and we did it at home too. 2 days...job done! Night and day. She very rarely has accidents and is great at telling she has to go potty. She originally had 11 goals set in her IEP to accomplish over the course of 32 school weeks. I am so proud to say that after 14 weeks, she has mastered 4 of those goals, is progressing in 6 and 1 is still emerging. She prefers to play with adults over the other 4 kids in her class. It's something that we can't really help her with much at home because she loves to play with her brothers.
Now onto the biggest, hardest subject...her growth. Last week, we learned that Rylee has pretty much stopped growing. She gained 2 oz and grew 2 cm to her length in 6 months. This is pretty much the difference of the weight of her panties and the placement of her body during measuring her length. We are not taking any drastic measures, like growth hormone therapy, right now. GHT isn't ruled out by a long shot, but on hold for right now. The main reason being, that the Endocrine doctor and any other doctors for that matter, doesn't know if this is safe for her due to her chromosomal abnormality because so little is known about it. She will be having an upper endoscopy next Monday to take lots of biopsies of her esophagus, stomach and small intestine. During our GI/Failure to Thrive appointment last week, we met with our regular doctor, Dr. Cathy who suggested that we do the Endoscopy. Rylee and I met the doctor who will do the procedure and who is all the head of the Failure to Thrive clinic. He and Cathy both agree that this is the last test we can do. After that, we "leave it in God's hands". Our goal for Rylee from the time we knew she would be coming into this world way too early and before we knew exactly what we were up against, was to give her the most fulfilling life we possibly can for as long as we had her. Unfortunately for Rylee, she can't live a fulfilling life at 22 pounds and 32 inches. She can't use the bathroom on her own, can't play on the playground like other kids, can't ride a bike, can't run or jump. We will do a feeding tube when it deemed necessary and life or death. We want her to be as independent as she possibly can.
The Endocrinologist suggested that we take a look at magicfoundation.org as research option into lives of other families of children with growth issues. I came across Russell Silver Syndrome. I called Dr. C to see what he thought of this. Still waiting to hear back from him. Russell Silver Syndrome is a form of dwarfism. Rylee fits a lot of the physical anomalies but where she is off is the affected chromosome. She has an abnormality in Chromosome 6 and none of the people with Russell Silver Syndrome have problems a Chromosome 6 issue. But no really has anything wrong with their chromosome 6, that's why we are grasping at straws. We are visiting Genetics in 2 weeks to do a follow up and I fully intend to bring this up!
