Thursday, March 28, 2013

Going to the Fair...

For as far back as I can remember, I've always enjoyed going to the local fair. My parents would take my brother and I and we'd enjoy petting the animals, walking through the booths, looking at the art from area schools, riding the rides and eating funnel cakes! Going there through the high school years was awesome as you could walk around a certain amount of time before having to meet up with parents a couple or few hours later. And then there was dating and walking around with my boyfriend who'd later become my hubby. Loved all the special memories! Just the smell of a certain kind of cooked food could immediately bring me back to a place in my head! Our fair has been in the area for 70 years so there are lots of traditions associated with going there with many people around here.

At some point, after my girls were older and didn't want to go with me and before the boys were born, I stopped going. For the last eight years, I've luckily avoided the fair, fearing that my kiddo would get lost or we'd spend too much money. I thought he wasn't aware of it and wasn't missing anything. Last year, he saw the commercials on tv and was interested in going but hubby was out of town so we didn't get around to going. This year, since it had come up in various conversations, we decided to just bite the bullet and go!

We had an AWESOME time! We showed up at the fairgrounds around 10:15 in the morning and left there over 12 and a half hours later! Yes, you read that right! It was kid's day so the tickets were incredibly inexpensive. Instead of having to have 4 or 6 tickets for a ride (at $1 each,) each ride was only one ticket. We rode rides, pet animals, even went to a rodeo (which happened to be scheduled that day in the building on the premises.) I had never been to a rodeo before! I don't know why...I'm a native Texan and there are horses everywhere around here. I just never thought about it, I guess. We sat for 2 hours in awe at the bullriding, calf catching, barrel racing, and sheep riding events. Then, we went out and rode some more rides, ate more food and eventually, with our feet starting to ache, decided to leave after a long day.

I think what made the day more fun than usual was that hubby and I rode many of the rides with the kiddos. We followed them through fun houses, sat with them on ferris wheels and fed the pets with them. Normally, I would wait for them at the exits (and we did on some) but hubby and I played too, just as if we were young again.

Here are some pictures from our fun day!

My preschooler on the first ride we rode! He had no fear!
 photo P1070898_zpsa8facf32.jpg

 photo P1070909_zps3d79dedb.jpg

My kiddo LOVES ice cream with sprinkles! This was the coolest sprinkled cone EVER!
 photo d21931e4-66a2-4e74-8827-268e17df7c7e_zpse72a5ceb.jpg

I was happy that there were many rides that the boys could ride together!
 photo P1070928_zps0112b223.jpg

On this particular ride, my older son got very frightened. He asked to get off it (as it was still loading and we were in the air.) He then asked me to help tell the guy on the bottom to get him off. So I did. We both got off and watched while my younger son and hubby rode the ride. I told him how brave he was to tell me he was scared rather than sit there and not enjoy it. I think he would have been fine but I remember how afraid I was when I was a lot older so I didn't push the issue.
 photo P1070934_zpscf5f7191.jpg

The boys feeding parakeets.
 photo P1070953_zpsf0dd5a57.jpg

All my boys!
 photo P1070956_zps5c53bf40.jpg

And some pictures of the rodeo:
 photo P1070974_zpsdd5fb1f5.jpg

Mutton Bustin' (small kids around 4 or 5? riding the sheep)
 photo P1070985_zps3d8ab744.jpg

Lots and lots of food!
 photo P1070997_zpse19a5e22.jpg

 photo P1080003_zps9982cd52.jpg

Our final ride for the night (another ferris wheel ride!)
 photo P1080006_zpsa6b4e974.jpg

(please forgive the huge picture sizes...with the new Photobucket format, I'm still experimenting on the right number to resize the pictures for here)

Tuesday, March 26, 2013

Memorable Quote

For years, my mother-in-law had a quote taped to the mirror attached to the little table by her front door. It was probably something she cut out of her newspaper or Reader's Digest. It stayed there for years and every time I left her home, I grabbed my keys off of the table and looked up to read it.

The greatest gifts you can give your children are the roots of responsibility and the wings of independence.
-Denis Waitley

I remember thinking about it after my older daughter left for California after graduating high school. She stayed out there almost a year before returning home and starting college. I initially cried in my office at work a lot the first week or two because I missed her so much but I kept reminding myself that it was my job to help her become her own self and independent.

And when my younger daughter had peer pressure issues with her friends, I thought about what I could do to reinforce her being able to take responsibility of her actions and make the right choices.

I don't remember what happened to that quote. It disappeared before I moved my mother-in-law into her assisted living facility. Four years ago, when I later moved her things into storage, I searched around that area hoping that the little piece of paper simply dropped behind the table. I couldn't find it and over the next few years, I couldn't remember the exact wording of that quote. I went to visit my MIL this week and she slept for the two hours I was there. I just read a book and listened to her sleeping through lunch. I knew she didn't know I was there but I just wanted to 'be' there with her for a while. I guess I just missed her.

Fast forward to a few days ago, while talking to my brother, I learned that I could search the exact wording of something online by putting whatever I wanted to find inside of quotation marks. I'm probably the last person to find this out but I tried doing it to find my quote. I wanted to find the quote that connected me with my MIL...the subject that provided hours of conversation about our children and our parenting choices...something we had in common...and I just found it! Finally.

Friday, March 22, 2013

3 month update (Apert Syndrome)

It's amazing how much you learn in such a short period of time! I look back at my first post of the birth of my first grandchild and how scared, shocked and sad we initially were. I was ignorant of much of what Apert Syndrome involved and wasn't sure where to turn. When I looked deeper, I found SO MANY other knowledgeable, caring, and empathetic people who were parents of, cared for someone with or were themselves people who had Apert Syndrome. While I still occasionally feel sad, I look to the other incredibly nice people who've already walked down the same road we've been led down. So many others have incredibly useful and interesting blogs and I love that Facebook can bring so many people from around the world together who have common interests and concerns. I have also learned that Olivia is very blessed to have few issues compared to many other kiddos in the same boat who are so much more developmentally and physically different/delayed. She is very blessed! She's now tracking as people walk around her and is starting to 'coo' and communicate. I love her personality and she's such a doll! She's now up to 8.8 pounds. Who knew that she'd get so much use out of newborn sized diapers!

 photo 3a9ecd3f-4fd9-47ba-bd5c-82220b26657b_zpsc9df7eb2.jpg

Here's where we stand now:

Olivia is almost 3 months old! We've met with a craniofacial surgeon who has a team who will treat Olivia when the time comes. He discussed her condition and gave us a timeline of probably surgeries in the upcoming months/years. I had read a lot of information beforehand so it wasn't a total surprise but, for me, it was reassuring. For my daughter, she didn't really think about it in advance and was a little disappointed. I think she hoped that he'd say her daughter was a mild case and would have some miracle cure or that'd she have fewer surgeries. I loved his philosophy of fewer surgeries and to initially tackle her gastric issues and do the sleep study.

She doesn't have the cleft pallet as we were initially told. Her pallet is extremely shallow but she does have a double uvula. He discussed her bone structure of her head and how it's fused. She'll have two or three cranio vault surgeries as needed to allow her brain to grow in her skull as the bones are fused and it can't stretch and expand as a child's brain grows. Her midface bones are fused too and the floor of her nose is high which makes it difficult for her to breathe. She uses her abdominal muscles to breathe instead of her nose which explains so much of her gastric and reflux issues. Those muscles work harder to breathe and sometimes forces food etc to come up. Her reflux meds help a lot but she still has a lot of pain each day. Because she has issues breathing, she'll need a sleep study so determine whether she's getting enough oxygen at night. Many developmental delays occur when there's not enough oxygen so we're checking that out now (should get the date for her study this week.) Also, her windpipe is in the shape of an 'o' as opposed to typical kiddos whose windpipes are in the shape of a 'c.'

About 30% of Apert kiddos develop a chiari malformation where the brain kinda slides into the spinal column. That sounded scary when the doctor mentioned it especially when we already know of some type of abnormality in her cerebellum in that area. But he also added that it might not have to be treated even if she got it (fingers are crossed.) She won't need an MRI until later and even if she's missing certain areas in her brain, the brain is powerful and can often overcome some issues. That is something to put off until much later.

Her feet are probably clubbed so we are also getting a referral to a pediatric orthopedic to check on that.

The surgery timeline is as follows (subject to change, of course) At 6 months, he'll check her skull/growth and determine whether some of the initial surgeries might need to be switched (ex: head first then fingers/toes.)

9 months - fingers/toes (separating them), probably ear tubes as well
12 months - fingers/toes (separating the ones not separated during the first surgery)
15 months - cranio vault surgery (head)
Between 5 and 9 years - another cranio vault surgery
Between 7 and 9 years - midface (where you pull the midface bones forward which helps with eyes, nose, breathing etc.) This one will require her to wear a halo on her head to pull them forward for a couple of months and it also reduces the look of an 'apert' kiddo.
older - hand surgery to put bends in fingers (her fingers are fused straight and even when separated, they'll still be straight. This surgery makes them more useful and they'll look like a typical hand looks in a resting position.)
after teenager - another cranio vault surgery and possibly jaw surgery (since many jaws might not match well)

The surgeon wants fewer operations so if something needs to be done, it's preferable to get the team together to do more than one thing at a time to reduce the number of operations/going under and is also less expensive.

Some things we didn't know:

Her hearing will be a little diminished (eustachian tubes don't open as easily)
Her walking may be a little slower (the tibia is attached to the ankle a little on the inside)
Her eyes are sometimes a little wonky because she's missing an eye muscle (has 5 out of 6)
Her watery eyes are just fine (they are lubricating extra because her eyes will be bulgy until she has her midface expansion.)
Her chances of having ADHD are increased even more (probably moreso since we already have it in our family.)
Teeth take a long time coming in and also a long time falling out (the bone is so dense.)
She'll get more sleep apnea as she gets older.

All in all, it's amazing how vastly different all this is a few months later. I don't feel as alone anymore after meeting so many friends and acquaintances online and this journey is not as frightening as I initially thought when there is that common bond of sharing Apert Syndrome.

This is a pic I took at one of Olivia's appointment's last week with her mom (my daughter) holding her.
 photo P1070846_zpsd81d3316.jpg

Monday, March 18, 2013

Younger Daughter's 22nd Birthday

How time flies! To younger daughter is now 22 years old!!!! We celebrated it at my house this evening! I bought her a purse (luckily, my older daughter went shopping with me as the one I wanted to buy her wouldn't have been the best choice, lol!) It's not often I catch her smiling for a camera so when she did, I took lots of pictures! I'm incredibly proud and happy to have her as a daughter and to be a part of her life! I love her bunches!

 photo sarah22_zps3bef2dd5.jpg

My mom used to make Boston Cream Cakes for me (my favorite) so I made one for her today as well. However, I made it a little more exciting (thank you Pinterest.) Instead of the plain yellow cake, I added color to make it lively and bright, just like she is!

 photo ef8ccef7-b1b5-4f80-8142-1efc31b6eb22_zpsa917a98f.jpg
 photo 94baa27a-fde1-4d1d-81df-be82ef768a4d_zps148ba10d.jpg
 photo c2cf1095-7e45-4ee2-aeb3-b9a1d477c066_zps1590f3e0.jpg
 photo 860497a5-7a5c-415d-afb5-1ad95b768fec_zpsb8cfac7e.jpg

My two daughters!
 photo 0ad57812-474f-49b0-aef4-2f83af8af204_zps0fe072b7.jpg

Friday, March 01, 2013

Crayon Creations

I love Valentine's Day! This year, for my kiddo's treat bag to each of his friends at school, I wanted to make a crayon thingie. I've been saving up crayons for many years (broken ones from home, those received at restaurants to keep kids occupied, some found along long walks.) I wanted to make ones that were heart shaped but all I had was one for gingerbread looking figures so that's what we used. Here's my process:

First, I sorted the crayons into Crayola crayons and the offbrand ones. I wasn't sure whether it made a difference but I didn't want to mix them, just in case. I then took the paper off of each of them. This took the longest time.

I did a 'test' by melting Crayola crayon pieces next to generic crayon pices just to see if there were a difference. There was! I decided to only use Crayola crayons for this project. The Crayola one is on the left and the generic one is on the right.

Next, I cut my Crayola crayons into tiny pieces.

Here's one pile I made.

I then put all the pieces into the molds.

I then baked them at 230 degrees for 15 minutes.

Here's a closer look at them. They are dried and cooled but look wet because of the light/camera flash.

They popped right up from the mold and were a great turn-out!