2:00 am Stomach Bug

2:00 am Jadzia was struck with some sort of stomach virus. I had to scramble to get spare sheets. Jadzia and I cuddled in front of the bathroom for awhile until I was sure she could go back to bed. I left a towel directly next to her and the trash can on the floor. Her temp was 102 and she was complaining that her tummy hurt in the middle. I laid next to her and rubbed her back. Finally she drifted off to sleep.She woke up this morning still saying her tummy hurt in the middle. She's nibbled on food all day but has not really eaten anything and the couch has been her constant companion. Fortunately she hasn't needed an sudden bathroom runs and looks to be improving. I think she'll be fine tomorrow.
Since Jadzia was feeling yucky we stayed in all day. We played games and told stories. Landon was attacked by mosquitoes again last night. He has another large welt on his forehead. He seems to react to mosquitoes the same away I did when I was a kid.

Inara has started saying something strange when she gets upset. She yells very clearly "Apple!". I'm not sure if she's been paying close attention to Landon, who has a long standing apple phobia. Whatever the reason it makes me laugh to hear her yell out "Apple!" over and over again. I really need to tape it so everyone can hear her.
Her vocabulary is really expanding and I think her curiosity is causing it to grow more rapidly. She is constantly holding things up for me to see and asking "That?". I will then tell her what it is and she will move on to the next object.

Happy Birthday, Hannah Marie!

Ronan had two appointments scheduled for today. They were supposed to be his surgeon first then the neurologist. They got switched because his surgeon was was busy making rounds at the hospital across the street. Perhaps this was an act of providence because the timing lined up just right for something to occur at the right moment.


The neurologist thought that Ronan's tremor episodes might be due to reflux but he wants me to continue to try and capture them on video. If I am unable to he will wear a portable EEG for five days. Since the episodes seem small he says we can wait and see for awhile. Next we were taken back to the surgeon's room and waited. Ronan had a reflux choking episode. I had been telling everyone for months about his reflux choking episodes and now finally someone could see what I meant.

When he is having an episode he acts exactly like he is choking on an object. His arms flail and his eyes go wide. He makes no noise and I have to smack his back really hard to get him out of it. His surgeon said with him having such episodes and the fact that he is needing routine esophageal dilations that it would seem we are at the point of needing reflux surgery. The surgery is a major operation with about a weeks hospital stay.

After the surgery he will most likely only need one more dilation and then he would never need another esophagus dilation again. The surgeon also informed me that until Ronan is old enough to grasp the concept of thoroughly chewing his food that he will have to stay on a puree only diet. The last part struck me deep because I don't know at what point in time Ronan will be able to understand how he needs to thoroughly chew his food.

I worry about Ronan's quality of life and wonder if he'll ever be able to sit down at the table after school and eat cookies with his brothers and sisters. When he was born I thought the big deal was his heart and the fact he had Down Syndrome. Turns out the thing I least worried about ended up being his biggest issue. The hole in his heart closed on its own and Down Syndrome is just a side fact about Ronan. The esophagus I thought was behind us when it was repaired when he was a day old. But it has become his greatest obstacle this far.

His surgeon is going to consult with his GI doctor and get back to me with the plan. He thought most likely Ronan's GI will want to wait until August 4th to go ahead and do the next dilation and get a good endoscopic view. After that if they both concur reflux surgery will be scheduled, as I type that I feel uneasy but I am trying to remember how God has never failed to watch and protect my little boy.For the evening it was my niece Hannah's birthday party. Hannah turns 4 tomorrow. She and Jadzia are around three months apart and are best friends. Jadzia got Hannah a purple barbie since Hannah's favorite color is purple. I had Human Biology class tonight and even though my professor was out of town we had an extra credit movie to watch. This was good because the class was only half as long as normal. I dropped the kids off at my brother's and sister in-law's. My parents were there and they had lots of help.

I snapped a few pictures of Hannah's cake before I left because I knew it would most likely be cut into before I returned. After class I came back to see if I could catch any of the festivities. I arrived just in time to see Hannah open her presents. She was well loved. She had had a lalaloopsy cake and got four lalaloopsy dolls. She also got another very pretty realistic looking doll and many other treasures.

The kids loved playing in the back yard. Landon was excited because he was getting better at making baskets with the basket ball. The kids played outside for awhile and then we headed back to the hotel. The kids got to bed late and I could hear them giggling and chatting for quite awhile after. Their energy seems endless.

Standing on your Head Contest

We are on 325 consecutive posts. I have not missed a single day of posting for the last 325 days. I can't believe it's been that long since I started this blog and that I actually kept at it. 40 more days and I will have completed this year long challenge. It's been a very rewarding project and I'm glad I decided to do this.

Today my mom took the three big kids to my sister in-law's for a play date. I had just the babies for the majority of the day. This proved to be a beneficial idea since the big kids were becoming desperate for ideas to keep busy. The boy's were having contests to see how long they could stand on their heads.Xander put on a little show for us. He was a superhero and demonstrated some karate moves. Of course since this was Xander telling the story the plot took many comedic turns. I especially liked his shoked face that resembled the classic Macaulay Culkin shaving face.`Jadzia and I had a short walk to load all of our laundry into my mom's car trunk. My mom was generous enough to offer to wash the large mountain that was our dirty clothes. Jadzia was a big help she carried the bottle of shout. On the way back up she noticed the pretty yellow daffodils and had to smell them.Shortly after the big kids left for their play date Ronan's in home therapist arrived. She was excited to see how well he is walking. We took a little field trip to see if he could climb down the stairs. He got so scared when we guided him to go down the stairs that we decided to leave it alone for now. Instead we had him walk the hall of the hotel. He went pretty far before wearing out at which point he purposely sat on the ground and scooted on his bottom.
Inara does not have a true desire to walk. She'll walk when she wants my attention because she knows when I see her I will get excited and clap. She will get up walk then sit down and give me a huge expectant grin. I of course will clap and talk to her in an overly enthusiastic voice. Also if I hold both her hands or even one she will walk like a pro. But if I try to get her to walk she firmly sits down and refuses.I've decided not to push it. What's the hurry anyway? I currently have Ronan who is gaining walking speed more everyday. I figure let me get used to chasing him for a little while before I have them both walking in opposite directions.This afternoon I got a call from Ronan's sub-specialty clinic. He has three doctors at this clinic. The one for tomorrow is his surgeon who did his esophagus surgery when Ronan was 1 day old. He sees this doctor on an annual basis and will for many years to come. The surgery Ronan had is rare and then Ronan on top of that had an even more rare aspect. For this reason they want to follow his outcome long term.The surgeon's office called to let me know they'd had a cancellation with the neurologist. Ronan was supposed to see the neurologist next week but since it was at the same clinic as is surgeon they offered me the cancellation spot. This way Ronan can have his surgeon appointment and then the neurologist will see him directly after. I was happy that we could get both appointments done at the same time.

Baths are now in order,the big kids were outside with their cousins all day. They came home happy and tired. Just the way I like them to be at bed time. After baths I might let them watch a short movie in bed and then lights out.

Life As Normal

Even while living in the hotel life must go on as normal as possible. This meant Ronan would have his normal Tuesday therapy session. The hotel is considerably closer to his therapy than our house is. I left a little later than normal and thought I knew the right route. I turned too soon into this winding residential area. I turned what should have been a five to ten minute trip into a twenty minute trip and we were a little late.

His PT was very excited to see Ronan was still walking more than he was crawling. In fact now he doesn't want to sit at all. He is on the go constantly and gets frustrated when he is stopped. He can even walk sideways and backwards with ease.

I picked up a quick lunch for the kids on the way home and then I had to leave right away. Ronan needed to get his eyes measured for his eye muscle surgery. He will be having surgery on July 18th and it should take about an hour. He'll get to go home as soon as he is awake enough as long as he doesn't have an asthma attack. He is also getting a different pair of glasses. The ones he just got ended up being too big and kept falling off all of the time. They will be the same shape as his old ones but will be a royal blue color.Xander has a new nickname for Inara. He calls her "Little peanut". He came up with this name for her seemingly on his own. Inara is becoming such a big girl. She is taking steps more and more everyday. Her hair is starting to get thicker making her look older.

Inara also still loves her two fingers on her left hand and has since she was about three months old. I always know when she is tired or upset because she has her too fingers in her mouth. It has sort of become her signature.
Jadzia looked styling today with her pink hat. She wore it most of the day. She loves accessories and if we let her she would have a closet full of hats, shoes and jewelry.