3:00 am Early

3:00 am arrived all to early this morning. I woke a reluctant Ronan and proceeded for the next four hours to attempt to keep him awake. He fussed and screamed and made mommy feel completely bad about the whole ordeal. On the way to the hospital every time we came to a stop I would tickle his feet and he would fume. Thankfully the hospital is less than five minutes from our house so we arrived with Ronan still awake. They got us back pretty quick and the technician had me lay down with him on a bed and turned out the lights. He fell asleep immediately and the tech went to work placing probes in various locations around his head. Then we waited. The test was two hours and required Ronan to just lay there and I had to stay next to him. I dozed as well so the test went by pretty quickly.

Once we got home I loaded the girls and we headed to the chiropractor. Xander left with my dad for his special grandpa day. I mentioned to the chiropractor that I believed Inara was starting to develop torticollis. He checked her and showed me the exact direction of her neck preference and it was exactly the way I had guessed. Fortunately it's just starting so he thinks she'll respond quickly to treatment without long term effects.

Landon had had severe torticollis when he was a baby. We were new parents and we thought it was funny he always looked to the right and also how his head would bounce back like it was spring loaded. It wasn't until one of his check-ups that his pediatrician made us aware of the problem. To this day Landon's head still looks flat on the right side because we had caught it too late. That experience made me very aware of the symptoms.

After the chiropractor I headed over to this gym. I had won a free membership from the bebe palooza so it kind of made the whole event worth it after all. They gave me a tour. I was excited because they have pilates classes included in the membership. They also have a unique feature of a full size movie screen in this room and you can work on cardio while you watch a movie on this giant screen. Now the only issue will be mommy finding time to slip away. They do however have a licensed daycare included in the membership. Maxium capacity is 20 children so my kids would put them at one-fourth capacity. I was supposed to pick up Ronan's new ear molds today but for some unknown reason they didn't arrive and the appointment was canceled.

Afternoon brought with it the blessing of nap time. As soon as the kids were down I crashed. The kids napped well today and I woke up feeling refreshed. We relaxed for the rest of the evening and I got caught up on laundry. Tomorrow is Ronan's therapy day. I think I might get to sneak in a workout at the gym before I head home. We'll have to see how it goes.
Jadzia built this today. I thought she did a great job.

Isaac brought this onesie home today for Inara. I thought it was interesting that I had talked about this verse the other day. He brought it home because he knew I loved that passage. He said it was a toss up between this one and another one that said "My crying may be annoying to you but to God it is a joyful noise".
The verse is Psalms 127:3 Lo, Children are an heritage of the Lord: and the fruit of the womb is his reward. Inara has certainly been a beautiful reward as are all my other babies.

Today she graduated

A little over a year ago Jadzia weighed 16 pounds and did not talk. Around the same time Ronan had just gotten out of the NICU after his 38 day stay. I had read a lot about Early intervention being crucial to children with Down Syndrome and what was kind of funny was a month before Ronan was born (before we knew he had Down Syndrome) I had gone to a baby event at the children's hospital and a group called Early Access had a booth.

For some reason they stuck out in my mind so after Ronan's Down Syndrome diagnosis was confirmed I dug through paperwork to find their flier from the event. I placed a call and left a message on their machine. At the time I placed the call Ronan was still in the NICU so the next morning after I had called a nurse came into Ronan's hospital room. She told me she was from Early Access and just wanted to let me know I was the first NICU parent to ever contact their Early Access program before Early Access had been able to contact them. We made arrangements for Ronan to start treatment after he came home from the NICU.

The day Ronan was released I gave them a call and that same week they sent out Cheryl Hood. The woman who would become Ronan's OT (occupational Therapist) and be the person whose worked with him the longest. I mentioned to Cheryl how Jadzia just did not talk and her 2nd birthday was approaching. I mentioned all the medical problems Jadzia had been having over the last year and how they had really put her development on hold. She decided she would send out Steffie. A teacher who works for Early Access. Steffie came out and gave Jadzia an evaluation and determined cognitively she was ahead of schedule but her communication skills were far behind. In other words the mental capability was there but for some reason she refused to speak.
Steffie continued to come out twice a month and work with Jadzia on communication skills. Steffie would show me different games and techniques to get Jadzia to use her words. Now over a year later Jadzia is talking full sentences and carrying on coherent conversations. We don't always understand every word but she gets her point across. The Early Access program ends at 3 years of age and Jadzia turns three on Saturday so today she graduated from the program. Jadzia loved when her teacher came over and always watched excitedly by the window on days I told her teacher was coming. Today when Steffie was leaving Jadzia said "See you next time!" We had to explain to her it was teacher's last day and she wasn't coming back because Jadzia was a big girl now. This was proceeded by a lot of tears and hugging.

Ronan's teacher came with Jadzia's teacher and she brought me over a video that shows 65 basic signs. It's easy enough that Ronan and I can watch it together and learn them. The video shows a picture then the corresponding sign then the picture again and so forth. I'm looking forward to learning all these signs. Once we get through the basic sign dvds she's going to bring me conversation signing DVDs. Hopefully by the end I will know quite a bit of sign language. I figure eventually I'm going to go get my sign language interpreters certificate. There are five main classes American sign language 1-5 and when I get to the end I will know sign language fluently.

Ronan has picked up the sign language quicker than I expected. He signed two words in a row yesterday. He signed "Eat more". Food is a strong motivator for him. We are working on drink and then he also knows "All done". I'm excited to teach him more so I can learn to communicate with him more effectively.

I'm off to bed now. Ronan has an EEG tomorrow to check for seizures. I'm told even if he is having seizures the test may not pick them up but we're at least giving it a shot. I have to wake him up at 3:00 am and keep him up until his test which will be around 7:30 for this reason I am going to bed now. I'm not sure Inara will take this too well though because now is her time to get cuddle time with mommy but we'll see how it goes.

Relaxing on Sunday

Ready for church!

We awoke to Fall this morning. I had to fish the kid's jackets out of the closet before church this morning. The rain from yesterday carried over to most of today. After church my parents took Xander and Jadzia out for lunch since Landon was in Marengo. Inara took a nap and I got some extra time with Ronan. Having a conversation with Mommy!

When the kids got back we did our weekly grocery shopping and headed over to staples so Isaac could approve work being done on his broken computer. We got the kids in bed and my mom watched all but Inara. We got our weekly date. We've learned it's a way to keep our friendship going and our marriage alive. We don't always get out of the house but we usually make sure we have time to watch a movie at home or sit down and talk. I've been blessed to still have a boyfriend after six years of marriage. Mad at mommy for not letting me squish sister!
I got over it though.

If you haven't noticed by now Sundays are kind of slow days for us but I'm so grateful for them. They are days of spiritual renewal and time to just unwind from a stressful week. I know technically the week is said to start on Sunday but I find that Sundays seem to be the end of my week where I let go of all the worries about the week to come. I guess that's a good way to start the week as well.

Next week will be interesting. I have three therapy home visits for Ronan, his EEG and ear appointment. Then towards the end of the week we have Jadzia's birthday and party. My baby girl will be three, I can't believe it! She's come so far in the last three years and tomorrow she graduates from the Early Access program but I'll talk more about that tomorrow.

Princesses, Presents and Pizza

We set out for Bebe Palooza early this morning. Half way to the expo it began to pour ran and I knew it was going to be fun since there was quite a walk from the parking lot to the entrance. Our double stroller does provide a canopy that covers the back part (where Inara was) completely. Ronan's canopy covered him pretty well as long as he didn't move forward too much. Isaac did bring an umbrella so he kept the three big kids covered and I ran for it with the stroller as we started towards the entrance someone showed us a back way that we could walk the majority of it inside and through sky walks.There was over two hundred people in line in front of us. Isaac bought our tickets and then the line started to move pretty quickly. There were quite a few booths showing various merchandise and plenty of drawings for prizes. We made our way around and Jadzia spotted them from a distance and pulled her dad's hand towards the ladies who were dressed as the Disney princesses. She got her picture with each of them the only one she missed was Tinkerbell who didn't come out until later.

Isaac was going to take part in the daddy-athon to win a $500 stroller but when he went to sign up they were only allowing four dads to participate and the spots were filled. We were a little disappointed because that was one of the reasons we had gone. Isaac had won a gift card at a stork affair a couple years back for having the fastest time of all the dads. At that event they let any dad that wanted try. For today Isaac had even practiced the night before. I was really surprised they had really promoted the daddy-athon in all the advertisements, there were hundreds of people there and they only allowed four people to do it.

The rest of the event went that way all the promised events had very few spots. Jadzia had been looking forward to the princess tea party for a couple of weeks and then we found out you had to sign up for it and by the time we tried all the spots were taken. There were lots of little girls there but maybe 20 seats. Jadzia was sad about it but we moved onto the bouncy house.

Isaac was an awesome husband, he watched all the kids while I finished looking at the rest of the merchandise booths. We left wondering why we had paid to get in. We have a stork affair through the local hospitals that is pretty much identical but there is no charge. We basically paid to look at what people were selling. On the positive side we did get a day out as a family, Jadzia got to meet the princesses and the bouncy house wore the kids out.

They ate lunch pretty quickly and then it was nap time. I sat on the couch to read one of my books for my school but I fell asleep half way through. I guess I needed sleep after the busy week. I woke up and it was a half an hour passed when I usually get the kids up. They were still out cold. I woke them up and Landon got all of his things together. He was going to Grandma Fullmer's house and he will be there for a week.

Grandma and Grandpa Fullmer arrived bearing gifts. They brought Xander Roller blades and Jadzia a barbie back pack and pony pictures. They had roller blades for Landon too but they were at her house so he could enjoy them during his stay. Both boys tried on Xander's ( I just realized I missed taking a picture of Xander in his skates). Jadzia was thrilled with her back pack and pony pictures. Grandpa, Grandma and Landon took off and then daddy decided we could order pizza. We watched a movie, ate pizza then it was bed time for the kids.

Eyes, foot braces and a chance at the news

Xander and Ronan in the Ophthalmology waiting room.


Today were three big events for Ronan. This entire week has been full of events for Ronan which in hind sight this might not have been a good week for him to make his television debut. I got him up early and I did decide to take Xander with me. We stopped at the eye doctor first where they determined he would need tear duct surgery. I've been assured this as simple as ear tubes, the only difference is it can take up to two hours instead of the quick half an hour at most for ear tubes. The surgery was scheduled for November 1st which was the first available appointment. Ronan's Ophthalmologist said he does over a thousand of these surgeries a year.

We rushed over to Ronan's orthopedic doctor to get his foot braces. Since Ronan's feet are as short as a 3-6 month old but much wider the size shoe he needed was too wide for the amount of Velcro on the shoe so his doctor attached an extra amount of velcro and they fit perfect. He will get new shoes and socks every 2 months (they have to be a certain type of socks to assure they don't wrinkle and cause blisters). He will get new custom braces every six months. Xander was thrilled with the choice of dinosaurs for the brace print. He hugged Ronan tightly and said "Thank you little buddy for liking dinosaurs!".

At this point it was 9:30 and we still hadn't had breakfast. The Gigi's playhouse event was for 10:00 and it was across town. We headed that direction but made a quick stop for doughnuts and strawberry milk, a favorite but rare treat for Xander. We made it to the playhouse just as the news crew was pulling in.

Once we were inside I set Ronan on the ground to play he looked around frantically then the tears started flowing. I quickly scooped him up but he nervously clasped his hands together by his face which is what he does when he gets scared. I comforted him. Xander wastes no time at all he meets a little boy named Roan who is four as well and has a little brother with Down Syndrome. They hit it off immediately.

The founder of all the Gigi's playhouses was there from Chicago and she actually remembered Ronan from the grand opening this last May. She suggests I take him to the quieter play area which I happily oblige. I set him on the ground and he is ok since no one else is over there. She rolls a ball to him and he surprisingly rolled it back. She spent quite a bit of time showing him how to work many different toys.

The time came that the news crew wanted to get Ronan on camera for the news. I pick him up and he buried his head in my shoulder. No matter what we tried he turned his head away from the camera. He did not want anything to do with being on camera. They did film him playing with a giraffe on the floor but he acted so shy I doubt he'll make the cut. They loved his glasses and the camera man really wanted to get him on but Ronan has a mind of his own. It's supposed to air next Wednesday at 10:00 but they will send out an e-mail so we know for sure the exact day and time. I'll post a link once it is up. Even though Ronan probably won't be in it the story should be good so everyone can see what Gigi's is all about.

I did discover two things today. One was almost all the other kids had braces almost identical to Ronan's the only difference was he was the only one that had the dinosaur pattern. Second I now realize how tiny Ronan is. The little boy Ronan is sitting next to is only ten months old. Ronan is seven months older.

After the news crew left we hung around and got in the group picture for the Gigi's web page then we left to head home for lunch. The afternoon passed quickly and before I knew it it was dinner time. I let the kids stay up a little late to watch the television premiere of WALL-E. Xander being a ornery boy bit up the hand on Jadzia's new Barbie . Jadzia was crushed so her dad let her have another one of her Barbies early and she was happy again. After the Barbie crisis was adverted the kids went to bed. And one more picture of Ronan. What are those on my feet??

Crashing Windows

A loud crash sounded on the north side of our house mid this morning. Part of the big kids' bedroom window shattered on the ground after falling two stories. This was a very random occurence and there had been no noted damage prior to this event. Times like these are when I'm grateful my husband can fix just about anything and he can do it with more than just duct tape. Luckily the part that fell was the outside lower layer and the inner one was still completely intact. He repaired the window and made sure the rest of it was safe.

The rest of the morning was uneventful. Landon worked on school, Xander did a little preschool, Jadzia colored and the rest of the babies played on the floor. By afternoon I put all the kids down for naps and I got caught up on all the tasks that have been neglected. I had sorted through more clothes and after looking in Jadzia's closet I realized she didn't have much left because all her clothes were 2T or smaller. I had a quick chat with Isaac and it was decided it was time to get her 3T clothes bought. Isaac stayed with the rest of the kids so Jadzia and I could have a shopping date.

I let her pick out most of her clothes and I found a couple of things for Inara as well. We do use a lot of hand me downs but I also make sure they get a few outfits that are new for each size they grow into. I got a new outfit for Ronan because he might be on the news. The President of Gigi's playhouse sent me an e-mail asking if I could bring Ronan to Gigi's tomorrow because our local news station is doing a story on Down Syndrome and Gigi's playhouse. They want as many kids there as possible. I'm not sure if they will pick him but I figured we should be ready just in case.

After we got home Isaac let Jadzia have one of her birthday presents early. She was so happy to discover her dad had actually bought her a barbie doll. She's been asking for one for a long time and Isaac kept telling her no. But being daddy's little girl he finally gave in and got her Cinderella, ballerina barbie.

We have an early morning tomorrow. Ronan has a 7:30 eye appointment, then he gets his foot braces and then it's off to Gigi's for the news story. I'm planning on taking Xander along with me. I've done a lot with Jadzia lately for all her birthday coupons. Landon gets to go to his Grandma's house this next week so I think Xander needs some special time as well. I try to get each them out alone every once in awhile. I know Ronan will be there too but I think he'll be just as excited especially since we're going to Gigi's , he loves it there.I thought these were cute pictures of Ronan. He loves his baby sister almost more than anything. He loves to crawl over to her bouncy seat, climb on top of her and touch her face, which he then unintentionally scratches her. Obviously this is not good on Inara. He's learned that I catch him before he gets to her now so he usually waits until I'm busy then he makes a bee line for her bouncy seat. If he spots me coming towards him he crawls faster. Today he got a surprise. He went over to give her his usual love and she wasn't there.

Surprise after a stressful day.

Last night was pretty bad. Ronan had a severe blue episode. He was making a funny noise so I looked over at him and he had his head jerked back, gasping for air and was blue. I quickly sat him up and rubbed his back which was the usual apnea first response I'd done with him many times before. It took a little while for him to wake up so I called 911. I am now concerned about our 911 system here. I had to call three times before someone picked up. I kept double checking to make sure I was dialing the right number. Then the minute the lady picks up she says 911 putting you on hold. Finally they took my call and I was able to explain what was going on.

By the time we got to the hospital Ronan was stable and happy again. The ER doctor is suspicious that Ronan's apnea episodes have actually been seizures this whole time. He sent us home with a paper to take to Ronan's pediatrician to get a neurology referral. We made it home by 3:30 am and Ronan cried and wheezed the rest of the night. We made it back up to the hospital at 9:30 and they removed his tube in a simple two second procedure. Watching how quickly the tube was removed I'm very grateful for the arm braces. We even got to keep the arm braces. They told us we'd receive the results in about a week. I went home to spend some time with the rest of the bunch and squeeze in Landon's school.

A couple of hours later Ronan and I took off for his 15 month shots. We had to get them done at public health because the fridge has been broken at his peds office. While waiting for his shots I put in a call to his pediatrician who after hearing of the events of last night wanted to see him immediately. He was a champ for his shots and only cried a little for his third one. We then took off for his doctor's office. Ronan's wheeze was very loud by this point. After listening to him close she determined his voice box was swollen from the endoscopy and told me to start his steroids. She is also going to call me with a neurology appointment.

While in the office we got a call from our chiropractor who'd missed us ( I hadn't been in since two days before I had Inara). He asked if we wanted an impromptu visit. We agreed and got our adjustments in. I got home in time to start supper and I spent the rest of the evening with the rest of my babies who I feel I've barely seen this week. Isaac went out and surprised me with my long awaited camera. It is so tiny and I was thrilled. It was a great surprise after a stressful week.

Since the rest of the kids are in bed I tried out my camera on the ever alert Inara.