The Circus

We were blessed with free tickets to a daytime performance of the Shriner's Circus. I love the circus, but wasn't sure how it would go taking 5 kids by myself to a circus. But it was WONDERFUL! The performance was a special performance for schools. The organization that provides Ryan's therapy, Brighton, had been given a number of tickets to share with their families.


It was a smaller sized stadium and on one side of the stadium, there were lots of school groups. We sat on the other side. I suspect most of the people sitting on that side of the stadium were Brighton families. There were less than a 100 people on our side, and yet the circus people played just as much to us as they did the other side.

The circus was a one-ring circus, which was great for me. My kids say I have Obsessive Compulsive Disorder (OCD). I don't. I just like things a certain way, and I'm a little uptight about a few things ... like: reading magazines from cover to cover, or not at all; organizing my candy before eating it; housekeeping stuff ... but I'm really not OCD. BUT... 3-ring circuses make me nuts because I know that if I'm watching one ring, then I'm missing 2 other rings.

And, who can attend a circus without having some treats ... sodas, nachos, pretzels, and cotton candy. Yum. We enjoyed them all.

Deborah and Johnathon were both very scared of the clowns. But Jacob had Deborah sit on his lap and he just made everything okay for her. Fifteen minutes into the circus, she was loving it! Johnathon enjoyed all of it from a distance, but didn't want to get too close.

David and Jacob rode an elephant. This was their 2nd ride on an elephant. I tried to get Deborah and Johnathon to do it too, but neither one of them would.

While Deborah was mildly entertained throughout the circus, her favorite part was actually AFTER the show. The boys all went into the restroom. Ryan, Deborah and I were standing across the hall waiting for the boys when she spotted one of the Alzafar's mini wheels. It was a beauty! She kept looking at it admiration. There were signs on it that said, "Do not touch." "Do not get in the car." "No sitting." An elderly gentleman noticed her great admiration and came over to see Deborah. He asked her, "Would you like to sit in my car?" She gave him the biggest, brightest smile ever. He took the signs off the seat, showed her how to open the door, helped her into the driver's seat, and watched her with an equally big smile.


When Daddy asked her about the circus, her first response was, "I got to drive a car!" She was beaming with joy!

A sleepless night

I went to bed last night around midnight. Ryan woke up around 2 and has been awake since then. He has a fever, and has been having a lot of myoclonic seizures. It's unusual for him to have them this early in the morning. I wonder if the fever is contributing to it. He had 47 in a 2 hour period. (It is a lot but even that is down from the 60-70 he was doing in 20 minutes back in July ... or was that August.) I'll keep an eye on him tomorrow and give the Neurologist a call. If this continues, we'll probably need to take another ER trip.

Happy Birthday, Johnathon!

My sweet, energetic, happy Johnathon turned SEVEN years old today!


We had a great day! The 5 younger kids and I celebrated Johnathon's birthday at Incredible Pizza. Then tonight we had cake and ice cream. (Check out the awesome cake! Jessica had agreed to make the cake, but then she was too busy. Johnathon had his heart set on a lego cake. So, I did my best. I think it turned out okay. He was happy and what else could matter.)


It was a great day! He loves his loot and I sure love that 7 year old boy. Every Mom should have such a happy child!

Best Birthday!

Today has been a great birthday! I'm so thankful that Nana, Papa, Jason, and Kevin could be here for my birthday. I have loved visiting with them and the kids have loved it as well!

I'm such a blessed lady. I have great friends who love me in spite of all my flaws, and an amazing family!

My nephews, Jason, Aaron, and Kevin, have an ability that I wish I could master. Each of them make me feel like I am the most important person in the world when I'm around them. I know that they have gone out of their way many times to spend time with me. And, they always treat me like I'm a great person. I wish I had the words to explain how I feel about them. I missed you being here, Aaron. Jason, thanks for flying all the way in from Cornell and then making a long drive to come spend some of your vacation time with me. And, Kevin, I appreciate you taking time off to come see me, and I'm so glad you were healthy enough to be here.

Mom and Dad -- I don't know whose idea it was to surprise me. (I suspect you thought it was fair game with all the times I've surprised you!) I'm so glad you did! Thank you for always being such good parents!

Washing Potatoes

It started pretty simply. I was washing some potatoes for dinner. Deborah REALLY wanted to help me. (She's at that great age where she wants to help with everything I do.) So, I figured she could wash some of the potatoes for me. It would occupy her for a few minutes, and give her a chance to help.


When I finally determined that the potato was clean enough, she was pretty soaked all over. Oh, but she had a GREAT time!

My Family's Visit

It's been really great to just visit with everyone!

Mom brought us a bunch of veggies from her garden, including a purple bell pepper.

Jason and Dwight talked tech, super intelligent stuff.

Funny things...

You know my family surprised me yesterday by showing up at my door. Well, in thinking about it some funny things have come to mind.

A few days ago when my dad asked me what I wanted for my birthday, I said, "Come see me." He said, "You know I can't do that right now. Things are just too busy." I believed him.

Then I think it was just Thursday morning when Deborah said to my Mom, "Nana, will you come to my house?" I bet that made it REALLY hard to keep the secret!

(I wonder if Deborah thinks they came just cause she asked.
She sure is enjoying it! She even got to wear Papa's glasses. Silly girl!)

I even said something to my Mom about coming to see me for my birthday. Her reply was something about the triple digit heat that we have here. And, I realized then, "Oh, Mom would be miserable here in Texas right now." (I hope it hasn't been too unbearable, Mom!)

Sis -- I can't believe YOU didn't spill the beans! I must have talked to you just before Mom & Dad left. Anyway ... thanks again to everyone who kept the secret! It was an AWESOME surprise!

Surprise!

So, this morning I had scheduled a meeting with a friend from church to hand off all the Cub Scout information. It was almost time for me to leave when Dwight said, "The garbage cans got dumped over." He asked Jacob and David to go out to clean up the trash off the lawn. Then he asked ME to go help them. Some grumbling thoughts when through my head. Okay, lots of murmuring: "Why me? I'm also getting ready to leave. I have 6 kids. I shouldn't have to clean up trash!" Really, I grumbled all the way down to the door.

Then I opened the door and ... AHHHH! My nephew, Jason, was standing there! Oh, my goodness! Then, my other nephew, Kevin walked around the corner. YEAHHH! OH, Wait! There's more! Then my DAD and my MOM walked up. I heard myself squeal. It was a squeal of delight! I have relived this moment in time over and over in my head. It was such a great moment!

They completely surprised me! I had no idea they were coming. Dwight did. Apparently, Dwight's known for a while. (By the way, Sweetheart, please next time give me some motivation/hint/even a command to do some preparation work. I don't know ... maybe get the guest room ready. But, please don't let me spend 2 days organizing a linen closet and the master bathroom when you know we have company coming.) Oh, I don't know. It was the best surprise ever! Hopefully, they didn't mind that the bed was not ready for them, and the bathroom had not been cleaned by an adult in a while.

I wish my sister and other nephew, Aaron, could have been here too. I understand that they had conflicts with work, but I hope they'll come see me too sometime.

Talk about feeling loved! This is going to be the best birthday ever!

Shoe Shopping with the Little Lady

Deborah has needed new play shoes for a while. Shoe shopping is usually a task that I let Dwight handled with the kids. I think he's just better at it than me. But he hasn't had time so I thought I would get it done.

So I took Deborah to a shoe store and looked through the racks of shoes. I showed her lots of nice shoes and she said "no" to all of them. Finally, she found two pairs of shoes that she thought would be acceptable.


I know the picture is not great. I took it on my phone, but can you tell from the picture that they are boy shoes. Definitely boy shoes. One has transformers on them. The other has cars. At first I thought she liked them cause they had lights. You know the kind that light up when you walk in them. So, I found a pair of nice girl shoes that had lights. "No."

When I realized I was fighting a losing battle, I let her try the car shoes on for size. I rationalized that I had better more important battles to fight than this one. As she RAN down the aisle, she said, "Look, Mommy! These shoes make me run FAST!!!"

That was the key. She wanted shoes that could make her run fast. So I found a beautiful (and inexpensive) pair of tennis shoes that were white with purple accents, and said, "Oh, Deborah, THESE shoes will make you run REALLY FAST!"

Guess which shoes we bought? :)

It really is all about the marketing.

Jessica is feeling much better today. I think she must have just been severely dehydrated. Tonight she was sassy and teasing her brothers, and busy designing a Mad Hatter Cake for Wednesday's party. Obviously feeling better.


Jacob is busy working on his Duty to God award. Unfortunately for Jacob, he is the learning guinea pig for me. I'm just figuring out the whole Duty to God program and the Boy Scout program. In fact, Jacob and I need to go through things tomorrow and set some goals for this week. He would like to finish his Eagle as early as possible.

David went to a science club today. They dissected a pig's heart. He thought it felt cool. This science club he's attending is amazing! Next week they are going to put a computer together from bare bones up. I'm sure he'll love it.


Johnathon has been really excited about life lately. I wish I could get that boy to talk about real stuff though instead of electronic games, computer sites, or some make believe thing. I've started challenging him to learn 1 new thing about the world each day.... AND, I don't accept "facts" from the Mythbusters. I do not understand how 30 minutes on the computer, and an hour tops of tv time can feed that child's imagination so much. I suspect we're going to have to cut out tv altogether during the week this fall. We'll see though.

Deborah has been a tough cookie lately. Picture my stubbornness and Dwight's stubbornness in a little 2 foot package with blonde hair, blue eyes and an amazing smile... yup, that's Deborah. Now imagine how empowered she feels by knowing that she has 3 brothers wrapped around her little finger ... and Dad's not too far away either. (Notice that I didn't say she's spoiled.) We are still working on who's in charge. The other day I said to one of the other bossy kids, "Who is the Mom?" suggesting that they needed to stop bossing other people around. A few minutes later, I told Deborah to do something, she looked at me very pleasantly and said, "Who is the Deborah?" Yes, we have a problem, but it is a really cute and often really sweet problem.

Ryan is still having clusters of seizures a few times each day. It feels like they're happening more often. I'm beginning to wonder if they are infantile spasms instead of myoclonic seizures. I'm not sure that ones better than the other. Our neurosurgeon friend told us that an EEG would probably be needed to differentiate them, but that it's probably best to just continue to treat the symptoms and not do the EEG too early. Much easier said than done. Part of me would like a definitive diagnosis. The other is scared of what the definitive diagnosis might mean.


Dwight started his new job last Monday. So today started the 2nd week. He's still learning about all the company policies and procedures ... ie red tape. We are so very thankful that his job search did not take too long, and that we have such amazing friends to network with during a job search. I'm so thankful that Dwight has such great skills and works so hard to stay current with technologies. I am very blessed and lead a very blessed life. I know Heavenly Father really blessed us. Sometime perhaps I will tell you of the miracles that we have seen recently. We truly have seen miracles.

Oh, maybe I'll get pictures loaded tomorrow. I hope the pictures of Ryan's birthday party turned out good. I haven't even looked at them yet.

Oh, one more thing ... we moved Ryan into his own room tonight. The black closet. (Don't worry. It's the size of a bedroom. ) Now, I need to decide how I'm going to turn the office into a therapy room. Should I paint 2 of the walls black and hang black black-out curtains over the window? Or, should I build a L-shaped PVC structure that can be draped with black fabric? Hmmm.... decisions, decisions. I'd love to hear your input....

Another ER trip ... but not for Ryan

So, it's Jessica's turn. On Tuesday, July 21st, Jessica started complaining of a headache, sore throat and a fever. She declined going to the coast with Dwight and the older boys because she didn't feel good. They left on Wednesday and from Wednesday through Friday morning, she laid on the couch not feeling well. She even missed out on an Art school party and a fun youth activity that she was looking forward to attending. When she was still feeling lousy on Friday, I took her to the dr. He ran a strep test that came back negative, and then determined that it was probably viral.

Her fever was gone by Friday as was the sore throat. However, the headache has remained. She's been tracking it on a scale of 1-10 with 10 being the worst pain she can imagine. It has gone down to a 2-4 at times, but then it jumps to a 7 or 8 for no apparent reason. Movement seems to make it worse. Tylenol, Motrin, or Aleve do not give her any relief.

She doesn't typical take naps during the day ... even if she's really tired. She also doesn't typically complain much. But the past few days she has pretty much just laid around complaining of her head hurting and sleeping. So, tonight when her headache jumped to a 9 after walking up the stairs, we decided to call the dr.

The Pediatrician recommended that we take her to the ER. So, Dwight and Jessica are there now. They are doing a mono screening, and all the typical blood labs. They are also giving her some IV pain relief meds. Dwight just called and said she's quite loopy. I'll post when we know more.

11.22p: Dwight just called again. The mono screening was negative. Whew. The IV meds were actually an antihistamine. Hmmm. They are going to keep her for a little while longer and observe her. She has had quite a bit of IV fluids and has not gone potty. So, once she goes potty, if she's feeling better then she can be released. I'll keep you posted...

12:15a: Jessica is back home and in bed. Dr is unsure whether it's viral, dehydration, or migraines. We'll follow up with our Pediatrician on Monday.

Reality

Today Dwight and I went to look for a new stroller for Ryan. We currently have a frame type stroller that we just put the infant carseat into. So, there is no seat. Ryan is quickly outgrowing the infant car seat, and so we thought we probably need to start looking for a new stroller.

We talked to the Developmental Pediatrician about what type to get. We had originally thought we'd be getting a mobility stroller; however, the insurance will not pay for a mobility stroller (ie child's wheelchair) until he's 3 years old. So, they recommended we find a stroller with a 5 point harness and a reclining seat.

Easier said than done. Did you know there is a $760 stroller? A stroller for $760. I personally think that for $760, it ought to change diapers too. Anyway ... we found 2 that seem like they would work. The best option is $350 and the next best option is $200. The best part of the $200 option is that it's neon green. Ryan would love that! :)

So tonight I thought I'd do some research. What do others with similar issues use? Oh, reality has hit kind of hard. One of the websites I have read bits of is about a little boy with Cerebral Palsy. In the past I have thought, "Well, at least Ryan doesn't have all that going on." But tonight as I went back to the older posts, reality hit. The other little boy at Ryan's age could sit unassisted for 20-30 seconds, could chew food, could pull himself with his arms, could lift his head when lying on his tummy.

I usually don't compare Ryan to other babies. Geez, we had so many babies born in our church congregation within just a few months either side of Ryan's birth that I learned very quickly not to compare him. Sundays were hard for a while. When I'd see the baby that was born less than 2 weeks after Ryan doing things, or our dear friend Gabriel who was born a month after Ryan cruising all over, it was hard. But I came to terms with it. Ryan just has health issues that we'll need to overcome.

But this other boy has similar issues to Ryan. It's just hard tonight. But tomorrow as I snuggle with Ryan at church when other Moms are chasing and trying to manage wiggly little ones, I will be able to remember all the blessings that are mine. And, I am truly thankful that our other little friends are healthy and into everything.

So enough blubbering for tonight. I've got several new pictures I need to post. Hopefully, I'll get to that tomorrow.

Can't resist

Deborah enjoyed Ryan's ding dong cake.

Too cute!

Still Celebrating...

Tonight we celebrated Ryan's birthday with cake and gifts. (Jessica had conflicts on the 29th, so we waited for her to join us.) Deborah and Daddy helped Ryan open his gifts.


Since this was a celebration for Ryan, we had the lights off and used a flashlight to spotlight the neon green wrapping paper. I used a flash in most of the pictures so that you could see what was happening.


The kids went shopping and picked out a gift for Ryan. He's a tough one to buy for. :) But they did a great job with the super sized green and yellow slinky. Ryan seems to really love it.

For the last few kids, I think it started with Johnathon, we have served Ding Dong Towers as their 1st birthday cake. They are the perfect first cake. They make a mess without a HUGE mess. Unfortunately, with Ryan's severe milk protein allergies and inability to eat solid foods, he didn't partake in the cake at all.


The other kids had a tough time accepting Ryan couldn't eat any of his own cake. So, we tried some stage 1 peaches. He wasn't at all interested in them, but I think it helped the other munchkins to feel better.


Happy Birthday, Ryan! We adore you!

*You might notice that Dwight has something covering his finger in the last picture. This is actually an infant toothbrush. However, we use it for "speech therapy." We suspect that Ryan's feeding issues with solids are two fold: 1) he lacks muscle tone and 2) he doesn't like the texture. The little plastic finger piece has a really soft bristled brush on one side and little bumps on the other side. When we first started working on "waking up his mouth muscles", we would stroke his cheeks (outside his mouth) and his chin. Then we progressed to using a washcloth to gently brush his cheeks and chin. Then we started touching just his outside lips with this little infant toothbrush and now we have progressed to gently brushing the inside of his mouth with the toothbrush. When we first started each of those stages, he would pull away. Now he seems to enjoy it.

Brotherly Love

Isn't this the sweetest sight? Brotherly love! (And, no, David isn't sucking his thumb.)

My friends and Ryan's therapists, Dee Dee and Denise, brought this cute little bear to Ryan for his birthday. The bear's tummy slowly changes colors and is so soothing. Ryan ... and all the kids love it! Thank you Dee Dee and Denise! We love you!

Happy Birthday to Ryan!

Can you believe it's been a year? We are so blessed to have Ryan as a part of our family!

Ryan's Occupational Therapist came over today and brought him the sweetest little white bear. When you push on his paw it glows and rotates through several colors. Dee Dee's visit was actually the best part of the day, at least for me. We had the sweetest conversation today. Ryan was a little unhappy about having to work on his birthday. But, we worked with him for a while, and then I let him rest in my arms. When Dee Dee was preparing to leave, I laid him down on his blanket. He obviously wanted to sit up. (He kicks, tightens his tummy and tries to move his body when he wants to sit up.) So, I sat him up. He looked up at Dee Dee ... really looked at her ... and then told her all kinds of things.

I wonder what he was telling her. He was so intent on communicating with her. He smiled several times and really looked at her. It was one of the sweetest moments I have seen with Ryan. It was as if his little spirit just knew exactly what she needed to hear and wanted to tell her all about it.

We love Dee Dee! We love that she has blessed our lives so much during this year. We love that she has helped us to learn so much about Ryan and how to best help him.

But yes the day was about Ryan. We love our Ryan and we're so proud of all the progress he has made. He has many reactive smiles now. He works hard to communicate with us. I wake up each morning to him saying, "Uuuup, uuuuup, uuuuuup." Then I get up, I walk to his crib and tell him that Mommy will right back. He then quietly waits for me to come back. No crying or yelling at me.


However, I actually love to hear him cry. You might remember that Ryan didn't cry at all for the first 10 days of his life. Even now, he seldom ever cries. So, when he does cry, it just makes my heart happy.

Ryan is also doing better with sitting and with his head control. He's still a little bit of a bobble head but it's definitely getting stronger. He also doesn't get mad about tummy time anymore. He can now roll from his back to his tummy, but he can't quite make it back to his back.

He has a couple of favorite toys that he can now hold and can akwardly bring to his mouth ... a rainbow colored koosh ball, a neon green/yellow ring thingy, and a white washcloth. Yes, a washcloth.

He still doesn't visually track objects or look at them in normal light, but in a dark room, he can track his neon green slinky, and a few other objects. He also loves a piece of slinky neon green fabric. His vision therapist calls it his snake fabric. (You can imagine how I feel about that!) I just call it his green slinky fabric.

He loves Deborah's bright pink ball, and Deborah loves all of his toys, especially his piano and his basketball.

Ryan adores Daddy, loves Mommy, snuggles with Jessica, feels saved by Jacob, loves being fed by David, needs rescued from Johnathon, and is friends with Deborah. And, now, Ryan is ONE!

New Job

Today was Dwight's first day on his new job. We are thankful that he was able to find a new job so quickly. We feel very blessed and appreciate all the networking that he was able to do.

I'm thankful for a husband who has mad interviewing skills and outstanding experience. It sure makes the job search a lot easier!

Whewhoo!

I just received Ryan's test results for Alexander's Disease and for Canavan's Disease. Thankfully, both tests were NEGATIVE. Whew!!!!

A Good Day

Today started early with seizures, followed by a 7.45 am appointment that lasted till 10.30. Then just as I was leaving that appointment, Dwight called to say that Walgreens had found 2 locations that had Ryan's new brand name drug in stock. One of those locations was about 1/2 mile from where I was at. Wasn't that convenient? I felt quite blessed.

After picking up the new prescription, I dropped Jacob and Deborah back off at home. Ryan and I headed over to the GI Specialists office to drop off a form they needed to complete the "correct way" so that we could get insurance to cover this insanely expensive formula. (Have I mentioned that it's costing $40/day?) Hopefully, we'll be able to get the right prescription in the right hands and get the insurance to cover at least some of the formula.

After a few nights of less than 5 hours of sleep, I was extremely tired. Thankfully my Dad was available to chat on the phone while I was driving over there. (Thanks, Dad, for keeping me awake, and for a great conversation! I love and appreciate all your counsel and your support!) On my way home, I stopped and bought myself a Lemonade from Chick-fil-a. I love their lemonade! Yum... anyway ... I was so tired that I felt myself kind of weaving a little. Thankfully, I wasn't far from home.

When I got home my sweet husband took over Ryan and made sure the other kids were taken care of so that I could lay down. I remember lying down on the bed at about 2, turning onto my side, and then ... well, nothing until after 5. I seem to recall my sister calling, but I can't remember what she said. (Sorry, Sis, I'll call you tomorrow.) It was nice to get a few good hours of sleep.

Tonight I had a great night. I talked with several friends this evening, and had an especially nice visit with a friend tonight, and felt very uplifted and motivated by the conversation. Perhaps I'll tell you more about that tomorrow night. It's late and tonight I'm going to hope for more than 5 hours of sleep.

Thanks for everyone's love and support!