Wednesday, September 10, 2008

Swim Swim Swim!

Nathan took 2 swim classes this summer. The first one was before our vacation and the second one was after we got back. Initially, they wanted him to take the first class over again because he wasn't quite ready to move on but then on the first day of the second session he passes all the requirements for that level so they went ahead and moved him up. He passed that one too! He did a great job and turned into quite a little fish this summer! He gave up his beloved Spiderman floaty suit and his arm floats and took to the water solo! He improved throughout the summer and really showed us what he can do! We are so proud of how great he did in his swim classes and also in learning to do so many new things in the water all on his own! Great job!

David also made progress this summer in the pool. He was brave and ventured away from the safety and comfort of his step in Grandma's and Grandpa's pool and learned that he can touch the bottom in the shallow end. He also loved to put his face in the water and kinda snorkel around with his goggles on. He did so great and we are super proud of him too! He would let us hold him and he would kick his legs. We even got him to try to do some arm strokes. As long as we held onto him, he did great! He has really overcome some of his fears in the pool this summer and we are looking forward to all the progress he will continue to make as time passes.

Jonathan wasn't sure about the water at first but eventually he grew to love being in the pool. It seemed to relax him at times and then other times he was just excited and was splashing and kicking all over the place! He much preferred to be held than to ride in a baby float. I think it was easier to splash and kick in someone's arms than in the little boat float! What a cutie!

Nathan's Kindergarten Graduation

I know this is not exactly in the right order of things but I realized that I never blogged about Nathan's kindergarten graduation!

He did a really great job all year and the kindergarten teachers put together a cute little ceremony/program for their kindergarten graduation. They sang songs together. We got to watch a cute video/slideshow of the kids participating in various activities throughout the year. It was so cute and they even made little caps to wear! Congratulations on a great year Nathan!

On to Idaho and Yellowstone

The Pace family took a trip to Idaho and Yellowstone this year together. We had a wonderful time relaxing and enjoying the beautiful scenery and all the fun outdoors activities!

We left Texas and drove north toward Idaho. We stopped at some point in the middle of the night and got a hotel room but I can't even remember where we stopped! We slept for only about 4 or 5 hours and then got back on the road again so we could get to Idaho and meet the rest of the Pace's at the cabin that we would be staying at. We got there before everyone else and we couldn't get into the cabin yet because it was still being cleaned for us so we just drove around and looked at all the other ginormous "cabins" around the area. It was beautiful and very close to the water. Eventually we all got into the cabin and got ourselves situated in separate rooms.

The first day was spent on the beach, playing in the water, riding jet skis and fishing. Jonathan slept most of the morning so I stayed there until he woke up and then we went down to the lake to join everyone else. The kids were all fishing and David got a hook caught in his leg but it wasn't bad and he pulled it out before any of the adults could get to it! He cried a bit but then he was fine. Doug and I went out on the jet ski for a while and then came back and took the kids back to the cabin. The water was cold but the area was gorgeous!

We also spent a day riding ATVs and other days were spent just relaxing around the cabin and enjoying being together. Doug and Nathan went white water rafting with almost everyone else except the youngest kids, me, Mom and David. We played games, watched movies, sat in the hot tub, roasted marshmallows, played pool and ate yummy food.

After church on Sunday, we took a ride into Yellowstone to visit the hot pots. We had a close encounter with a bison who decided to take a stroll down the middle of the road! The picture I got is not zoomed in at all! He was THAT close to our car! It was kinda crazy! The hot pots were cool to look at but it was very hot out there! Obviously! LOL! Jonathan enjoyed riding in the backpack on Doug's back and David and Nathan just loved following their daddy around everywhere!

On our last day, we went to see Old Faithful before we had to hit the road again and head home. It was pretty amazing to see that. The boys picked out some volcano making kits in the gift store and then we had to leave the Pace's for home. We drove to Alpine, UT that night and stayed with Lana, Jared and Laurie for the night and then headed home the next morning. On our way out of town though, we stopped at Cabella's and let the kids see all the animals they have on display and also try out the shooting game inside. We got home late and we were exhausted. We had a great trip but we were all happy to be home and sleep in our own beds finally! I think Jonathan was the happiest of all of us though!

Texas and the Family Reunion

After we left the MIND Institute, we went straight to Texas for a family reunion with Doug's family. The drive was long but the kids were amazingly well behaved for the trip and we had a good time visiting Doug's home state!

The first thing that happened after we left Sacramento was that the kids all got settled in the car for the long trip. David and Nathan watched movies and Jonathan watched David and Nathan and sometimes the movies. Mostly he just sat and looked out the window.

David made himself a bed on the floor and Nathan made himself a bed on the seat and they stayed in those spots for most of the drive. David slept and watched movies mostly. He also got very clever about sneaking snacks without us knowing it! Nathan spent most of his time playing PSP , watching movies and coloring. Mostly PSP though. He got a Ben 10 game and he was obsessed the whole trip!

Jonathan surprised me by how good he was in the car. He also made some great progress on some things while we were driving. He was quiet and didn't really fuss much at all except when he was hungry or tired. He has never been good about sleeping in the car so I was really worried about how he'd do on this trip but 5 minutes on the road from Sacramento, I looked back at him and he was sound asleep! I was amazed! Then later I was amazed to see him holding his own bottle up and drinking from it while he was sitting in his carseat, sitting up. He had not been able to do that yet so I was glad that he mastered this on our trip, even if he did use his feet half the time! It was cute!

We stopped in Albequerque for the night and were joined at the hotel by Jared, Laurie, Ethan, Rachel, Luke and Brady from Utah and Geoff, Natalie, Jacob, Anna, Bente, Isaac, Keaton and Lola from Arizona! The kids all went straight to the pool to swim before it closed for the night and had a great time! I don't know about anyone else but we had a hard time getting our kids to go to sleep that night cause they were so excited! The next morning, we all had breakfast and got on the road in a caravan. Doug and I provided the walkie talkies and most everyone seemed to enjoy using those to talk between the cars and tell jokes and play games. It definitely made the drive go faster! We made a quick stop at the border to take pictures by the Welcome to Texas sign then we continued on.

While in Texas we spent lots of time with siblings, aunts, uncles, cousins, and Meemaw of course! WE had a great time. It was wonderful to see Meemaw and everyone else and get to know some of the relatives that I had never met before. We had a family reunion with Meemaw's family. We ate some good BBQ and took some pictures and then we went to a community pool and played in the water. It was a fun time!

We also paid a visit to the cemetary to visit David's (Doug's dad) grave. The kids were a little freaked out to see Nana's name on the headstone next to his but we explained what that was all about. Then we also visited Grandmom & Grandad's grave and Papaw's grave among other relatives. It was hot and dry so we enjoyed some yummy ice cream after we left the cemetary.

We got to go to Chuck E. Cheese with the Black family (Wright family friends) including our friend John who we hadn't seen in years. It was lots of fun to see them and the kids had a fun time playing games and eating pizza. We ate some more BBQ the next day and the next day I think. LOL! There was a lot of BBQ to eat but it's the best! We had a good time all together and were so glad we all got to make it down there! We even got a chance to get a video record of some family history, stories and such from Meemaw and her sisters! This is something we will all cherish and pass on for generations to come. We hope to make it back to Texas again before too long!

We also got a visit from Jim and Mary while we were there and that was a treat too, as always! (Jim is one of Doug's uncles on his dad's side) They came to our hotel to visit us before we left and the kids ran all over the place while the grown ups talked and laughed together. Thankfully we were able to contain the children in one big room with us so they were at least a little under control! At one point, Natalie took them all for a walk and they all found a big tarantula on the ground by the hotel. They thought it was the greatest thing and insisted that someone take a picture! Yuck! Then the next morning Jim and Mary came back and brought cookies and watched all the kids swim one last time before we had to get on the road again! The grown ups and older kids also had a fun game of Uno Splash that morning! We were so glad to see them again too!

All in all it was a wonderful visit with family and friends and was actually somewhat relaxing if you can believe it! We all just kinda took each other's kids in and took care of everyone together! That's what family's for right! Live, laugh, love and play together!

Our trip to the MIND Institute!!!

We had a wonderful experience but it was very busy. We arrived on Sunday night, June 29 and checked into the Ronald McDonald House at UC Davis. We have stayed there a few times before and it is always wonderful. They always make us feel welcome and comfortable. Usually, at check in, each of the kids gets to choose a toy, book and blanket to keep. This time, they got to choose a toy and a blanket. I was so pleased with David and Nathan! They politely turned down the blanket offer because they decided they have enough blankets and they didn't need a new one! How great is that! They each chose a toy and then they were able to choose a few movies and video games to "rent" while we were there. They thought that was the best thing ever!

Our Schedule:

Monday June 30

9-10am Welcome and Consent Wright Family
9:15-11:15am NTRI-TS: Cognitive Testing David
10-11am Clinical History Update Mr & Mrs Wright
12:15 Check-in to walk to IRC Wright Family
12:30-1:30pm NTRI-TS: Mock MRI David
1:30-3:30pm NTRI-TS: MRI Scan David
4-5pm Parent Interview (Vineland) Tiffany
re:David & Jonathan

Tuesday July 1

9-10am NTRI-TS: Neuropsychological Tiffany
10-11am Medical History Tiffany
11-11:30am CATSYS Balance & Tremor Tiffany
11-11:30am Eyetracking David
12:45pm Check-in Tiffany
1-3pm NTRI-TS: Cognitive Testing Tiffany
3:15-4pm NTRI-TS: Mock MRI Tiffany
4-6pm NTRI-TS: MRI Scan Tiffany

Wednesday July 2

9am-12pm Baby Developmental Testing Jonathan
and Eyetracking
1-3pm Clinical Medical Evaluation Tiffany, David & Jonathan
3-3:20pm Blood Draw Tiffany, David & Jonathan

So... David's MRI was cancelled because Louise, the geneticist, was doing the clinical history update with Doug and I and she realized he was scheduled for an MRI and was adamant that they shouldn't even try it with him because she felt it would taint his whole visit as this was scheduled on the first day. So she went across to talk to the guy who was heading that research study and informed him that David would not be doing the MRI per her decision. Whatever. That was fine with us. He would never had done it anyway but I figured there wasn't any harm in trying. So that left a huge chunk of our day blank. Then I went for the parent interview and was so tired cuase I didn't get a nap that I started falling asleep during that so we decided to finish it the next day. David's cognitive testing went ok but he got bored about halfway through and wouldn't finish it which they said was fine. It's research and they just take whatever they can get. They said he did good up to that point so that was good. Then he and Nathan just got to go play while we finished up what we had to do. They have volunteers and interns who take the kids and play on the playground or let them watch movies or whatever. They have so much for them to do there and of course it didn't even occur to me to take pics of things! Sorry! So Day 1 was pretty uneventful, not a whole lot of anything to report.

Day 2: David's only thing was the eyetracking thing and Doug said he finished that in about 10 minutes. As you can see from the schedule, the rest of the day was all me so Doug took all 3 kids to the zoo in Sacramento which he said was a major disappointment. Thank goodness it was cheap! LOL! He did get some good pics and videos so that was cool.

My stuff wasn't too bad. The neuropsych testing wasn't bad and I've watched David do all the same stuff before. I had to take Jonathan with me though for something. I can't remember. OH! I know what happened! They cancelled my 9am appt that morning for the neurpsych testing and moved it to 8am on Wednesday and we had to check out of Ronald McDonald house between 8am-11am and I was in appts that whole morning so Doug had to do that and I had to take JJ cause he had an appt. Well they didn't have anyone to take him for that first hour before his testing started so I had him with me while we were doing it. She said I was doing very well considering I had a baby to deal with and stuff. I'm interested to see how all that turns out. Lol. So on Tuesday, they changed my morning stuff and we finished the parent interview from Monday and then I had all my other stuff to do. I only saw Doug and the kids for about 5 minutes before they left. The balance and tremor scale was interesting for me because I know my dad has done a lot of stuff with regard to the related disorder FXTAS (Fragile X-related Tremor/Ataxia Syndrome) which they see in mostly adult male carriers 50+ but they do see it in some females carriers as well.

The MRI was not bad. They did the cognitive testing first and it was no big deal and then they did the same tests while I was in the MRI and then they did some MRI images while I was just laying there. They had me pick out a movie that I could watch but I fell asleep. I kept falling asleep during the "games" that they had me play for the cognitive part too and I felt really bad but they said they got some good images and it was all good. It was the end of the day and I had not had much of a break at all so they said it was fine and they take what they can get. They gave me a disc with my MRI images too.

Wednesday, I went in at 8am with JJ and started the cognitive testing. At 9am, we took JJ out and gave him over to the two ladies who were doing the eyetracking study then when I finished with my thing, I met them out in the hall and we moved on to JJ's developmental testing. He did great, especially cause he was so tired! They said he did perfect on the eyetracking. They said he was probably the best they've ever done it with and that they wished they all were as good and easy and Jonathan! Then we met with Dr. Hagerman.

She started with me. We talked about my weight gain, emotional issues, medications, Fibromyalgia, stress fracture, etc. She checked my reflexes and lungs and weight and height and blood pressure then checked a few other things. Doug stood there laughing because he said it was jsut like a field sobriety test! She had me stand in front of her and touch my finger to her finger then to my nose and then to her other finger and then my nose and so on. Then I had to try to walk heel to toe in a straight line. I apparently would not have passed THAT FST according to Doug! LOL! I couldn't walk a straight line like that to save my life! LOL! We talked about goals for me for losing weight to help with pain management. She definitely thinks that if I can lose the extra 100 lbs or so that I'm carrying around right now that it would go a long way to help me feel better pain-wise.

Then we did Jonathan and he was so funny cause he did not want to have her touch him at all. She checked his ears, eyes, nose, throat, lungs, and measured the size of his ears (length and width) and how much they "cupped" and then measured the size of his testicles. (males tent to have enlarged testicles. Let's just say that David's are barely bigger now than they were when he was born!!!! Not joke!) She said Jonathan was healthy and that she was really impressed with how well he is doing. We talked about where he is developmentally and then we talked about some of our concerns. I expressed concern that we are starting to see some signs of anxiety in him so we talked about that a lot. One of the medications they put David on a while back is called Minocycline. It's an antibiotic but they have seen some really good results with it in boys as a targetted med for anxiety and adhd so if it works the way they hope it will then we could possibly cut out two meds and replace both with this one. She said they have also had some good results in baby mice with fragile x with it. She said that with Fragile X, a big part of the problem is that the brain synapses are misfiring and not connecting with each other properly and when the baby mice were treated with this medication, it repaired the brain synapses completely and reversed all signs of fragile x so she said it is something we might consider trying as Jonathan gets a little closer to 2 or 3 years old and if his anxiety gets bad enough to try it. She said the only negative side effect they've seen is yellowing of the adult teeth but she said that if it repairs the whole problem of fragile x then you can just cap the adult teeth and no one would ever know any different! I'm interested to see how this research pans out in the future.

David. What can I say. He let her check his ears and eyes and nose and chest and stuff. She was even able to get a somewhat decent measure of his ears but then came the testicles. You try telling a 9 year old with Fragile X who is just learning about privacy and keeping private parts covered that he needs to drop his drawers and let the lady dr take a look at his privates! LOL! He was not having that at all! She was able to get a slight peek but not a very good look at all. She said based on what she could tell that he's not in puberty yet because the testicles will get larger when he starts purberty and they haven't done that yet. Then we talked about a lot of issues. The possible seizures he may have had or may still be having. She ordered and EEG which was already scheduled. I came home from vacation to a letter with his appointment and everything for August 14 up at UC Davis medical center. I had to change the date cause the 14th is the first day of school so he is going up for that on August 28th. Not sure how that will go but we'll see. So then we talked medications, Dr Barnett, anxiety, and other issues such as his apparent rage that has emerged more recently. They have 2 new medication trials beginning in the fall so we will be heading back there in October probably to start him in on those studies and see if either of those meds helps him at all. Both are for anxiety and adhd symptoms which are his two major issues. If his anxiety is in control then he is pretty well under control. I'm interested and excited for those. We'll see from there.

After that we discussed what bloodwork was going to be done for each of us. Jonathan, they are just finishing the fragile x testing from last year because he was so small, they couldn't take all the blood they needed for all the tests necessary so they had to do it in two phases. They tested David for a number of things including diabetes, and some other stuff. I can't remember. They are testing my thyroid, and various other hormone levels and such. We'll see what they come back with. They want to see if I am starting to have early menopause which she doesn't think so but just wants to be sure. So that was that. We went for the blood draw. I went first, then Jonathan and then David. Jonathan bled well for once and they got it on the first poke. Then I took him out to comfort him and Doug went in with David. David apparently yelled during the blood draw, "I don't wanna die!!!" LOL! Poor guy!

So that's the gist of our trip to the MIND. We'll be going back in August and then again in October or around there.

It's been a long time!

I know it's been forever since I've blogged. I'm so sorry. The summer was just crazy and busy and it all flew by so fast and the blogging got away from me. Then I knew how far behind I was and how much I needed to blog about and then I go overwhelmed and began the denial phase of just ignoring it because I could deal with how behind i was! Silly me! I have moved beyond the denial phase now and I promise to catch up as fast as I can so you can all see all the fun things we did this summer! I also need to fill you all in on how the kids are doing and the grown ups too!!!

I've also had various computer issues and am continuing to have them so I don't know how long it will take me to get pictures and everything going but I will get them on here as soon as I can. My computer keeps freezing on me and then I have to reboot and I never know how much I'll lose when I reboot. I just lost about half of this post so we'll see. Please bear with me as I try to get things updates. I have a list of things that I need to blog about so I will do my best to go in order by date and get it done quickly! Hugs to you all!