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Friday, November 6, 2015

Halloween fun, outings, appointments and IEP/placement!

Things have been busy since my last post, we did several fun things for fall/Halloween.  We took the kids to the zoo, the dinosaur museum in Ogden for their Halloween night which included games with prizes, and accompanied Carter on a field trip with his school to Black Hills Farm and went to our ward's trunk or treat.  The kids had a fun Halloween night trick-or-treating at my parent's house in South Jordan with the rest of their cousins.
Dinosaur Museum

 The kids got their flu shots, and Carter had his yearly eye appointment at Primary Children's.  It was a little crazy taking all three kids with me, but the doctor said he was the most attentive he had been for him yet and had excellent vision.  Carter also got fitted for new braces for his feet/ankles since they're too small.  His wheelchair is also going to be adjusted for his growth.  We also had to go back early morning to Primary Children's for more dental restoration.  Carter managed to get his spacer out with his tongue, which he could have choked on, so we had to go back in for them to put in a silver crown with the spacer attached.  This will stay in better and will help guide in the adult tooth once it comes in.  With Carter having a smaller mouth and getting lots of adult teeth fast (6 so far), and not being able to tolerate braces in the future, we'll have to keep a close eye on his teeth and how they come in.  He didn't like the effects of the anaesthesia, but as last time, as soon as we got home he was happy again.

I love this picture of Keaton, so happy!  He was even sick that day.  Keaton had his 15 month appointment and was 55% for height, 60% for weight and 50% for head.  He is still receiving physical therapy once a month and is doing great!  He just had his 6 month review and met every goal but one, and we made new ones.  Every time his therapist sees him he is improving rapidly.  Keaton is pulling up to stand at many surfaces and tall kneeling and transitioning in and out of all different positions, and feeding himself small finger foods.  The pediatrician was concerned with a few things:  that he doesn't point or wave which is a pre-language skill, and that he isn't talking other than babbling.  So we are going to have the family development specialist start coming out as well, to help Keaton with his language and even some feeding therapy.  Keaton is behind, but not that bad.  We want to work on him side-walking by furniture and even with a walking toy that's weighed down so it's slower.  He loves playing ball, tossing it back and forth with you.  He loves to crawl everywhere and is getting faster and better form.  The stinker is getting teeth so he still isn't sleeping all night.  He loves his milk and eating most things and watching his sister play and imitate him and definitely still a momma's boy and loves to cuddle!  He has quite a pair of lungs on him and screeches when he wants your attention and loves to imitate noises.  Carter and Keaton often fight over the same toy which is funny.  I love my little but big Keaton boy!

So, I had Carter's big IEP today and his 3-year placement meeting.  It was three hours long!!  Intense.  Their paperwork is now mostly online and his teacher is still new, so I think it made things take a little longer than usual.  The speech therapist and child psychologist weren't present, and over speaker phone was his physical therapist and a school representative.  Present were myself, his teacher, occupational therapist, school nurse who feeds him and another school representative.  We went over Carter's progress and testing in every area, especially vision.  Now that he has such a glowing report from his eye doctor and there was no mention of inattentiveness, they didn't have much to say on his vision.  He does still need time to process what he's looking at, but can see both near and far and to the side and tracks wonderfully.  Being seizure free and seizure med free certainly has helped with his level of awareness.  His scores were highest in social because he loves everybody!  So cute.  Sometimes it's hard to hear how low he actually is on his skills, but to me he's doing excellent!  You learn to appreciate every achievement, no matter how minor.  His physical therapist was most pleased with him, because overall he had made 11% improvement.  He's pulling up to stand, loves to walk with his push walker at school, he's all over the place!

We also had to discuss goals in each area:  pre-academics/vision, gross motor, fine motor, speech and social skills.  There has to be a math and language goal which the math is covered in fine motor and language in speech.  A few examples of his goals in vision; he will recognize his name in big-sized print when given 4-5 options with 90% accuracy, and that he'll independently pick an object out of 5 choices.  In social skills, that he'll learn to take turns playing with peers and even learn to play with them.  So far he mostly plays with adults or by himself.  In gross motor, they want him to lower himself to the floor independently 4 out of 5 times, take 3 steps between furniture, and continue to work in his gait trainer.  While he is great at standing, he has trouble getting down safely on his own.  In fine motor, that he will place 3 items into a container (also a math goal, can count as you do so) and learn to help put on his coat or shoes while using both hands.  These goals are because he is great at taking objects out of things, but not back in.  And he is good at using one hand, mostly his left, but needs to learn to use both together.  His thumb is also extended and he doesn't use it to pick things up, instead using a raking motion, so the OT suggested a splint for his thumb to pull it in to help him learn to use it.

Finally, speech/communication goals.  Since the speech therapist was absent, I talked to him over the phone to go over his goals.  Carter is showing interest in imitating noises and being so aware and interested in what's going on around him, that we want to explore his communication to help him be successful in life and school.  Obviously so far, his communication has been sorely lacking because he is non-verbal and doesn't sign or point.  So, we want to work on using pictures more for communication.  They've already done this some, but we want him to do it more consistently.  We want to find 10 words or sounds that Carter can use as approximations so he can request a desired item.  For example, if he can say 'ba' we can use that as bottle whenever we feed him, for him to identify the action.  Or 'ma' for mom, etc.  He can't say actual words yet, but we'll start with whatever noise he can say.  Then, we want him to be able to make a choice out of 4 pictures for what activity or object he wants.  Then, following reading a book or an activity, have pictures that represent that activity and ask him questions and have him answer by selecting the picture that goes with the answer.  We may look at using a communication device as well.  A lot of kiddos end up with pictures all over the house to represent an activity or object, so their non-verbal child can make choices.

The last part of the meeting was to discuss placement.  It's been three years since it was discussed, and with his vision not being a huge issue, there was really not a need for him to stay at a school that focuses primarily on vision.  Their goal is to educate the child in the least restricted environment possible, while still making sure the child is receiving what they need.  I knew this was coming, but was still sad because he's grown so much and done so well at the school for the deaf and blind.  The district doesn't like you "shopping around", so they're sending his file to the Davis district, then they'll see which school can meet his needs and let me know.  I will also likely contact our neighborhood principal to get a feel for the Kindergarten special ed program there.  They call it a functional skills class rather than special ed class.  He would go from full days to half, but they can still meet his IEP goals and speech and therapy needs there.  Of course any change this big is scary, so we'll see what happens.  They want to transition him at the beginning of the new year.  The plus side, is Carter will be able to focus more on education and not so much on vision as he has in the past few years, and he'll have more interaction with his peers.  They say it's sad to let a kid go, but great because it means they are growing and ready to move on.  We love our Carter and his wonderful progress and are so thankful for all the teachers he's had to help him along the way!

Tuesday, October 6, 2015

School, Family Pics & Dental Work!

We've been settling into our house, and one of the fun things we bought was a playset for the kids to play on outside.  We still need to get Carter a swing, but in the meantime we've been using hammocks for him.  Each child had their own room, but Sierra has been scared at night, so now she shares a room with Carter.  So far they both have adjusted very well.  Carter started Kindergarten at the Ogden Utah School for the Deaf and Blind campus.  He leaves at 7 (I love his driver) and gets home around 4, except Wednesdays he's home at 1:30.  Long week for a young kid.  They had school pictures last week, so I'll post those when they come in.  The school has already hosted a fun carnival and family day at Cherry Hill, both which we've missed unfortunately.  As soon as they get a swim therapist, Carter will be able to swim weekly as part of his goals.  He's built up his strength again with his walker and wearing his braces.  The teacher and class is new to him, but he seems to be doing pretty well.  They also have a library visit every week and it's all sensory which is great.  His IEP is end of this month, so I hope it goes well.

Carter saw his GI doctor in August for the year, and he was pleased with Carter's growth and health.  We checked some labs to make sure his salt and other electrolytes are fine because all he takes is Pediasure still and water, but they were all normal.  He is now completely off his seizure meds and has been seizure free for over 2 years.  He has gone from 6 to 2 meds in totality, which is awesome.
We've had fun exploring our new home area up north.  We went swimming at the Clearfield Rec Center which all the kids loved.  We also went to the zoo a few times, soaking up that sunshine while we can.
Sierra started preschool at the Head Start in Clearfield, she is doing very well so far.  She goes twice a week from 9:15-12:45.  We are working on flash cards and learning her color/shapes, numbers, letters and more.  She enjoys her teacher and being more independent.  Her teacher visits us twice a month at home for an hour to work on things, and she also has monthly reading groups and father/daughter activities.  During this little bit of free time, Keaton suddenly took off crawling on his own everywhere.  He's also pulling up to kneel and getting into things like a normal kid should.  It's nice to see him catching up.  We've had several birthday parties lately and also a nice visit to Brighton and Silver Lake.  It was a nice Sunday walk to go on.
We had family pictures on my side for the 4th time in 6 1/2 years, because the family keeps growing so fast!  Those pictures are on the right side of the blog.  I was pretty pleased with them.  We had some nice friends give us a special needs trike for Carter.  He's about tall enough to do it on his own, and Sierra loves standing in the back of it.  The grand kids got a kick out of it the other Sunday.  The older ones took turns riding it and others around on the back of it, while others chased after it.  It was like a mini gladiator race, lol.
And this is just a nice photo of my dad with Carter, he loves him so much!
Today, Carter had a dental visit at Primary Children's Hospital in Salt Lake.  We had to check in at 7:15 to Same Day Surgery, and he went back about 8:40 to receive anaesthesia.  They took xrays, properly cleaned his teeth, put sealants on, a spacer on one side and extracted a tooth on the other side.  It all took around an hour, and when I went into recovery he was kind of waking up and pretty mad.  Poor guy.  I'm sure he has terrible memories of the place, and it's been awhile since he's been there for anything major.  Once I got him home and fed and gave him Ibuprofen, he was a lot happier.  I hope I can keep his teeth cleaner this time around, especially with several permanent teeth in now.  They look so nice and clean now!

Just a shout out, a bit late, to my mom for losing 100 lbs+!  She looks great and is so happy.  

What's Coming Up:  IEP end of October, HALLOWEEN!, vision appointment...
It's Fall!!
Last night, Carter's tooth spacer came out.  Stinker!  So now he has to go back in November to have a crown with a spacer attached to his tooth.  The problem is he's so young but getting his adult teeth, and his mouth is so small.  We'll have to watch his crowns real closely for the next several years to make sure they come in properly.

Tuesday, August 11, 2015

Keaton is 1 & The Move

Keaton turned 1 on July 15th!  We weren't sure when we were moving, so we did his party the weekend before at the Herriman Rosecrest Splash Park.  We had cupcakes and lots of family and cousisn came to play with us.  My brother in law took pictures of Keaton which turned out adorable.  He has the greatest smile with all those teeth, and is definitely a Momma's boy.  He loves his brother and sister and playing with toys.  Carter and Keaton often want the same toy and will fight over it.  Keaton is a picky eater but is doing well with whole milk now and loves to eat puffs.  He loves to turn on his side to sleep and has to have his soft bunny or a blanket against his face to sleep.  He was 20% for height and 70% for weight at his appointment.  The shots are never easy for him, he takes a few days to recover.  We love our Keaton Thomas!

We finally got our first house a few weeks ago!  We moved from West Jordan to Clinton, Utah which is about 45 minutes away.  Getting the house was actually a very stressful experience with all the delays and last minute faxes and emails.  We had to re-arrange our moving plans several times also, but we finally got it.  Because of July 24th being a holiday, we had to move most our stuff in the garage until the house posted in our names, which ended up not happening until Tuesday instead of Monday.  So we stayed with my in laws for a couple nights, then took up the beds, rest of our stuff and food on Tuesday evening.  Our new ward helped us get our stuff into the house, so it was kind of like moving twice but so nice for all the help we got.  The kids stayed through Wednesday with my in laws so Chris and I could try to un-pack.  It's been two weeks today and we only have a few more boxes left to un-pack.  The house was built in the 60's so it is an older home and we still have work to do.  But we feel somewhat settled in and like it's starting to be home.  My priority is always to get up the wreath, pictures and curtains.  

The kids each have their own room which is so nice.  We also have a front room now and a family room, so we can keep the toys and TV in a separate room which is nice.  I have my Grandmother's piano in my front room now and it's so nice to be able to play again.  The house is a one level, over 1400 square feet.  There is a one car detached garage and a good sized yard that's completely fenced in and has sprinklers.  There are two nice trees in front and one apple tree in back.  We have space for a garden behind the garage and a covered patio area and porch.  We have just one neighbor, on our left is a storage unit which we don't mind.  The house had an outlet for a gas dryer, so I've still been hanging clothes to dry on a clothesline until the electrician comes out.  The kitchen also doesn't have a dishwasher, so I have a roll-away one that I use.  Just a few differences.  There is a crawl space under most the house that's about 4 feet tall for storage, and another fairly large storage closet which is nice.  There is no hall closet for coats and stuff which is odd.  I love the white siding, I'd like to do shutters in front on two of the windows with a matching star, and a porch swing.  We also want to get a play set and trampoline for the backyard.

Being homeowners is fun so far but busy.  I was excited the first time Chris mowed the lawn and trimmed the trees.  We have a Walmart and many other stores just a few blocks from us, so the location is nice.  We're not too far from the freeway, but are now about 45 min-an hour from family.  There's a Swig that just opened up, I want to try it:)  We lived in the upstairs of my brother in law's house and we're so thankful to him and his wife for letting us stay there so long.  It helped us stay close to family and was a great deal.  Sierra has become so close to the Thorup side of the family now since she got to play with them and see them so often.  This summer was kind of odd because I knew the move would take up a lot of our time.  We didn't go to Lake Powell this year with my family because Chris didn't have anymore time off work from Disney Land, and we also missed a day to Lagoon and weekend trip to St. George because of packing and waiting for the house.  So what's coming up?  Carter starts Kindergarten at the Ogden USDB on the 31st, and Sierra will be starting preschool with Davis Head Start soon too.  Keaton starts therapy back up today with his new therapists, so I hope he can start making some progress.  He's had a rough time with the move I think, he's been fussier and waking up more at night.  Carter sees GI tomorrow for his yearly appointment, and vision in November.  Just two more weeks of horse therapy, then we're done.  It's so far from us now we'll have to find something else for him to do.  Anyway, bye for now!

Tuesday, June 9, 2015

Disneyland, Preschool, Horses & Appointment

We were able to go to Disney Land in the middle of May, and had a great time.  We went with my whole family except one of my sisters and her family, and Carter.  After debating how he would do with the long drive and different sleep arrangements and lots of time in the wheelchair, we thought it best to leave him home with his Grandma.  It ended up being a wise choice because Carter had a bad cold that entire week.  We started to get it on our trip unfortunately, but I think we were too busy to notice.  Sierra loved all the rides, she said more after each one.  Ariel and It's a Small World were her favorites.  We saw a couple parades and had lunch one of the days at Ariel's Grotto, where we saw several princesses.  Sierra wore a different princess dress everyday and just ate it all up.  By the third day she was getting tired and a little difficult, and the last day there she had a lot of meltdowns.  Three is still really young to go.  Keaton was such a trooper!  He was so good in the stroller or our arms on the rides he could go on.  There were only one or two things we weren't able to do because of time- Peter Pan was closed which is my favorite.  It rained some two of the days there, thank goodness for ponchos.  We stayed just three miles away in a house that had a pool.  My parents gave us the master bedroom and bathroom since both kids slept in our room with us.  It turned out surprisingly well.  We drove Sunday (Mother's Day) to St. George to sleep overnight and break up the drive, then finished driving to California on Monday.  Had a barbecue and swam and got ready for the next day.  Tuesday was in Disney Land, Wednesday and Thursday in California Adventure and Friday in Disney Land.  Saturday we skipped the beach and drove to St. George to stay overnight again, then Sunday came home.

Upon returning home Carter seemed pretty sick, and got worse fast.  I took him to the pediatrician and he had a bad double ear infection, eye infection and cold.  He also threw up a few times.  With eye drops and antibiotics he got better pretty quick.  But soon I got really sick and Keaton too.  Then Sierra threw up a few times and got an eye infection and sore throat.  We were really sick for a couple weeks, even with antibiotics and eye drops.  It was rough.  Thankfully it was over Memorial weekend so Chris was home for four days to help.  I felt like I had just caught up on laundry from our trip then we were so sick for so long.  My sister brought banana bread, my sister in law dinner one night, my parents dinner twice and a get well basket, a cousin brought a basket of treats and toys, and my in laws brought multiple meals- it helps they live so close:)  I'm so blessed to have such loving family.  I hate seeing my kids sick, especially when there's only so much I can do.  Keaton ended up so dehydrated from his sore throat and ear infection that he had to get fluids at Primary Children's.  Little Keaton has had 3 ear infections in 2 or so months, so he is probably going to get tubes in his ears.  Poor guy inherited my ear problems.  His physical therapist moved, so he'll be getting a new one.

Carter had his last day of preschool last Thursday.  My mom and I went to his classroom with the kids to see his yearbook and talk to the teachers.  He was playing in pudding and got it everywhere!  But he loved it.  It was so nice how much they all liked him and talked about him.  They suggested some summer activities and we shared resources with the other parents.  Carter is loaning a push walker over the summer to help him keep up on his walking.  He got a glow stick, cotton candy and bouncy ball to take him.  One of the high school students who had worked with him all year also bought him a birthday gift.  So nice!  His teacher is moving on so he'll once again have a new teacher next year.  She predicted he'll be ready to mainstream soon, so we'll see.  We have been house hunting online and this Friday we start our official search.  Crossing my fingers and toes we stay close to family, but we'll see.

Carter was able to start back up with horse therapy.  Chris took him and he loved it so much he cried when he had to leave.  He was able to wear a helmet just fine this time.  Our parents and one anonymous donation helped us to get him going again.  They were surprised how big he is, it's been a few years I think.  Chris also celebrated his 29th birthday on Sunday.  We also had South Jordan Days, we had a parade and went swimming.  Then my sister's new baby boy was blessed.  11 grandchildren now for my parents, crazy.  Carter had another yearly appointment today at Shriner's.  I got to take all three kids with me, yay (sarcastic).  I can't do a stroller and wheelchair, so when I'm with all three I have to do a wagon.  It was tricky but it worked.  He had x rays of his hips and spine since last year it was curved a little.  His orthopaedic doctor said it was orthopaedically perfect.   Because he's walking and climbing things now, his spine is straight and hips where they should be.  I'm so glad!  Oh, Carter also lost his third and fourth tooth within days of each other.  He looks a bit homeless now:)
What's next?  Well, getting through the summer:) with horse therapy every week and house hunting vigorously.  Then getting Sierra ready to start preschool and Carter Kindergarten.  We'll still be working on therapy with Keaton.  I love my kids and their different personalities and needs, they challenge me to be a better person.  More loving, kind and patient.  Until next time, adieu!

Monday, May 4, 2015

Resources & Updates

Carter had his yearly appointment with Dr. Nancy Murphy, his comprehensive care doctor.  She was a bit surprised when he yanked her hair hard, which I was just about to explain to her he does.  She doesn't think he has a mean bone in his body, but she was surprised that he wouldn't let go even when asked to.  Stinker.  He's 75% in height and weight so doing well, he has chunked up a bit.  She was pleased with what he is doing and didn't need to make any changes.  I spoke with the social worker for some resources for the summer, which I'm still looking into.  Carter is registered to do horse therapy this summer, once a week.  That will be fun for him to do again.  I also just applied for HopeKids  who I was told do monthly movies for the family as well as other activities, and Push To The Finish  where they race with your child in their wheelchair.  I think Carter would love that since he loves going fast, and it's cool because it's like they are racing even though they can't physically run.  

Carter was able to get a family zoo pass through Angel Hands this weekend, who also sponsors his baseball games.  This month we have a meeting with Wasatch Adaptive Sports  Carter will be able to bike this summer and ski this winter in Snowbird with the family.  I'm excited for these cool new activities we get to try together.  It's so nice too that they involve the family.  It's hard to do things all together since all my kids have different abilities.  I'm also looking into Camp Roger and CAST which is Catch a Special Thrill.  It's a fishing day for special needs kids and their parents.  I also heard that the Salt Lake County Parks & Recreation department has a lot of things for kids with intellectual and/or physical disabilities.  I love finding out new things and resources for Carter to get involved in.

Update on Keaton:  Keaton had his 9 month appointment and he is 30% for weight and 50% for height.  Not as heavy as I thought he was.  We are doing a swallow study in a few weeks because he gags on his solids.  He also doesn't like people food or putting things in his mouth much.  I just want to make sure he isn't aspirating and he may possibly need OT to help with feeding.  It's interesting the path Keaton has taken, some of it very similar to Carter's.  They both wore helmets, both had physical therapy and swallow studies.  I'm not saying I think Keaton has a diagnosis or anything, it's just interesting.  I think it is also personality, because both boys are good natured and laid back.  We need to get Keaton motivated to move so Carter can't keep attacking him.  Keaton is a good baby, sweet and happy.  He still wakes up once at night and fights naps, but otherwise has the cutest bluest eyes and sweetest smile.  He has been a real sweet addition to the family.

Update on Sierra:  Sierra had her 3 year appointment following her My Little Pony party over the weekend.  She is 80-85% for height and weight.  I knew she was tall because she wears a lot of 4T dresses and pants.  She is pretty close to being potty trained and is talking more.  She loves apple juice and chocolate milk and dancing to music and wearing pretty clothes and shoes.  She loves to imitate people or things and when people ask her name she now says 'I Elsa'.  Lol.  She kisses Keaton a lot and calls him 'cute baby' and gives her brothers toys when they cry or are sad.  She loves to swing and jump on the trampoline.  She is full of life and so pretty and funny.

Carter's last day of school is June 4th, his preschool graduation.  We also have Disney Land next week.  We are still house hunting but no luck yet.  This weather has been beautiful and fun to be out in.

Saturday, April 18, 2015

Over my Head

So lately I seem to be reading a lot of blogs written by moms and dads alike, about the daily struggles of parenthood.  I wish I was a better writer but a lot of things they said were exactly how I felt.  I've struggled sharing my thoughts because I'm afraid people will look down on me, judge me, or even question why I'm a mother.  In fact, I've even had someone tell me that maybe I shouldn't be a Mom.  Imagine the nerve.  I am pretty open about sharing a lot of my feelings, the good and the bad.  It seems like people don't always want to read the bad.  Like they just want to see those great family pictures and family vacations, etc.  But what about the day to day things?  I like to see people post a little of everything:  their meals, vacations, kids going to school, kids games, rough days, tired means they're human like me.  I think some people like to just display their good side to the world.  And keep the hard or ugly things hidden.  Some things truly are tmi (too much information) or private, I get that.  But for a mom, a stay-at-home kind of helps to know others are roughing it too.  That some days they can't wait for their kids to go to bed, that they are struggling to discipline their child, that their child had a major meltdown in the's normal.  Refreshingly so.

Before I was a Mom I probably would have scanned over those posts.  But now...I DEVOUR them.  I breathe them in.  It gives me a sigh of relief.  Thank you to those moms for sharing your hard times too.  I can't thank you enough.  On the days when I don't know how to explain my feelings, you say it just right for me.  You get it.  You understand.  I admire moms and dads whether they work or not, whether they have one kid or ten, or whether their house is clean or not.  I have learned to keep an open mind and to really try hard not to judge.  I don't know their situation.  I will be kind.  I am not perfect, but that is my goal.  So when I see the others people in the grocery store wince at me when my kid is whining and I'm ignoring get it.  Right?  Because sometimes, you are so tired and just need to get in and out of the store.  You just need a few things.  And please, heaven forbid, your children will behave so you can get out.  But no, sometimes they do freak out and sometimes you do have all three kids and one of them is handicapped so you are trying to manage them in one cart or maybe a double stroller while your toddler is running off.  And you get those looks and winces.  Sometimes I want to snap at those people, but I'm learning they either forgot what it's like or they don't know what it's like.

Every once in awhile someone very nice, who understands, will lend a hand or give a smile.  That is ENORMOUS in my world.  Thank you!  To the moms out there in the stores with screaming kids, possibly without shoes...I get it.  I do not judge.  I smile and wish I could help, but my own hands and legs are already taken up.  When I see that mom in church looking exhausted and annoyed with her kids, I get it.  When I see the mom looking put together and serene and her kids well behaved I think, good for you.  You are lucky.  Maybe she is one of those that really is just that good at her job, or maybe her kids really are just that good.  Who knows.  I try not to envy her, but I do relate more to the moms not so put together.  I relate to the moms with pony tails, tired faces and excitable kids.  I especially relate to the moms I see with handicapped children.  It is another level of multi tasking and backbreaking work, literally, if you have to carry them.

I used to have high expectations of myself as a mother.  That I would stay in shape, have a nice home, well behaved and smart kids and a happy life.  Problems?  Nah, no problems.  I don't even think I wanted that many children because I knew, even then, it must be a lot of work.  So the first kid came and what, it was a boy and he ended up with a diagnosis and early intervention and multiple appointments.  What?  This already wasn't cracked up to what I was hoping for.  Then a beautiful, smart and typically developing girl.  Then the gamble, a third kid.  A beautiful, big and happy baby boy.  He ended up needing a helmet and therapy too, and being a bit behind developmentally, but he was my sunshine.  My kids are still little; 5, almost 3 and 9 months.  I am in the thick of it.  My 5 year old acts like a baby to a 3 year old, depending on the skill.  My almost 3 year old threw us for a loop when she went through the terrible two's.  This I have understood.  They will get older, they will progress, they will be able to do more for themself (except my oldest in some ways), but there will always be problems.  Maybe money problems, maybe a job loss...who knows.

We have been through many shocks and challenges in our 5 years of being parents.  I have learned it is very hard, exhausting work.  I know I am in the thick of it.  So it is hard for me to see the finish line, or easier times.  I am often tired, even irritable and overwhelmed.  I am a perfectionist in some things and others not so much.  I have my weaknesses and my strengths.  I share my feelings in the hopes I can help others.  When I say it is hard, it doesn't mean I don't love being a Mom.  Because there are those moments that almost break your heart.  When your toddler hugs you and says "I love you Mommy" and your baby goos and smiles at you and your handicapped son hugs you and his eyes say he loves you even as he is pulling your hair so hard for the millionth time...amidst the same day to day routine, the piles of noisy toys, the same shows for the hundredth time...I manage to find something great each day, sometimes a few things.  And even if I only get a little bit of alone time, I pray it is enough, because I have to clean, then sleep soon to start a whole new day again.  Do I dread it?  Oh yes, I do.  A lot.  And I get discouraged at the messes and the things I'm trying to work with my kids on and they don't seem to be getting it.  So much to worry about and so little time.

But this I know- my three children are a beautiful, amazing gift from God.  He has entrusted them to me.  I will never be this loved or needed in my life.  This touched.  Sometimes it is too much to take, but I take a deep breath and embrace it.  Instead of being on my phone I try to look at my kids in the eye to let them know I am present.  I love them.  So much.  I never knew I could feel so much at once.  It's insane.  I never knew how hard or fun it could be.  I never knew that someone saying 'enjoy every moment' would make me want to pull their hair.  But I am so grateful that I get to stay at home with them, to see all those milestones and special moments.  To take pictures and play with them.  To teach them.  I try to take the good over the bad and appreciate what I have.  But I'm not perfect.  I'm still trying.  To the mom reading this also trying to take a deep breath and forge on, I get it.  Four hours to bedtime.  You can do it.  I can do it.  Don't be so hard on yourself.  Sometimes you just have to give what you can and ask God to do the rest.

Tuesday, March 17, 2015

Deseret News and Update!

In January the Utah Symphony and Opera hosted an event just for special needs kids and their families.  It was at the Capitol Theatre for about 45 minutes, and Chris and I went on a date with Carter there.  He originally sat in his wheelchair by us, then we moved him to a seat next to me.  He loved how it rocked and seemed to enjoy some of the music.  The rest of the time he kept spinning in his seat.  It was neat to go to an event where we didn't have to worry about how loud Carter was, because many kids there were doing the same.

The Opportunity Foundation of America: Eagle Eyes hosted a Wheels on Ice event at the Cottonwood Heights Recreation Center.  I was excited to go take Carter ice skating in his wheelchair because I know he likes speed and even better, it gave us some alone time.  We were joined by other Eagle Eyes workers, the mayor, Olympus High students that volunteer at several schools and other kids with their families.  I haven't been skating in forever and it was tiring, but Carter loved it.  He just wanted to go faster and faster.  He kept waving his arms and smiling.  The mayor Kelvyn Cullimore Jr. offered to help take turns going with Carter.  Several of the volunteer students knew Carter and introduced themselves.  It was nice to meet people that love and work with him too.  I noticed people taking pictures and as we'd signed a waiver already, Deseret News asked us after for our names and Carter's diagnosis.  Surprise, we were in the Deseret News paper on Sunday!  Here are some pictures from the event.  After it was over he literally cried for an hour straight, he was so sad to stop.

Another neat thing for Carter to participate in, is the Miracle League baseball at the Gene Fullmer Recreation Center in West Jordan, close to where we live, hosted by Angel Hands.  He will get to play with assistance, and I think it's awesome that there are things like this out there.  We haven't done this before, so I'm excited.  I also am trying to raise funds to help us put Carter back in horse therapy this summer when school is out.  Insurance doesn't cover it or respite, which ended in January anyway, and it is expensive.  We are starting to look for a house or condo, so lots of big changes coming our way.  We also have Disney Land in May to look forward to.  It's crazy how fast time goes.  Chris is busy working and going to school, working hard for us.  Sierra is potty training and doing pretty well.  We are also looking to get her into preschool this fall, and dance next spring.  She turns 3 next month! Keaton is 8 months old and sitting up, and getting six teeth.  Poor guy.  He's had a few sicknesses and ear infections, so hopefully his luck will get better here soon.  He is done with his helmet but needs Early Intervention because his gross motor is slightly behind.  He won't stand or bear weight on his feet, like Carter used to do, so we will do physical therapy twice a month at home.  While I was disappointed, I realized I at least have the experience to help him.

1p36 Deletion Syndrome & Awareness is having their annual conference in July in Florida.  We've never been able to go because of funds or having babies, and they are taking applications for a grant to go.  I hope we will be able to go with Carter and meet people.  We'll see.  We celebrated our 6th wedding anniversary in February, and I just recently cut a lot of my hair off.  It's nice to have a change.  On Feb 2 Chris lost his step grandpa and we attended his funeral in Idaho.  Carter has a 3rd loose tooth and molars coming in.  He is climbing stairs and onto couches and people, anything really.  He loves to swing or go outside.  He is doing so well walking with assistance, better than with his gait trainer in fact.  His school therapist is going to look at something different for him to use.  He got new daffo's (braces) and had a parent/teacher meeting.  Carter is making great progress in all his goals.  His teacher described him as such:  'loves to be the center of attention, a rebel.  Has to be reminded to not grab peer's hair.  He escapes at any opportunity.'  That's my boy.

Carter can find his name when given two choices in big font.  Carter can match ten objects with their picture, he will pat his play sign when he wants a toy but a lot of times will just go get it himself, he is better at taking turns and sharing, he is getting good at stacking and doing puzzles if you almost line the pieces for him, he is still working on using two hands to do an activity.  He is obviously doing great at scooting fast and walking if you help him.  I am so pleased with how he is doing.  I love hearing his teacher talk about him glowingly.  Life is almost always busy with three kids and daddy in school, but I'm trying my best to keep up:) and provide all the needs for my kids.  I am thankful for everything I have and for our health.  We got a new nephew last week named Colin, so that makes 11 grandkids on my side- 6 boys, 5 girls.  I love seeing families grow!

Saturday, January 3, 2015

2014 in Review

I noticed a lot of people have been writing about their 2014 year, so I thought I'd so the same!  2014 was a good year for us, pretty healthy and no hospital stays!  That is a huge plus for us.  We had our share of colds but nothing serious.  In January I turned 28 and Chris started school at DATC (Davis Applied Technology Center) in Kaysville.  He is in a machinist certification program that will take around 2 years to complete.  Chris works in this area so he already had several years experience and was interested in it.  This is an intense and pretty hard program.  We also sold our Subaru that was having lots of issues and bought a Kia Spectra 5 for the gas mileage for Chris.

In February we had Valentine's Day of course and then celebrated our 5 year anniversary on February 27th.  Chris and I were able to go to Zions and stay in St. George for three or so days in my parents' second home.  It was so nice to be able to get away for longer, although I sure missed the kids!  I was over four months pregnant at this time so we weren't able to zip line like we wanted to.
We had Easter which was fun because the kids got to attend several egg hunts and got new outfits.  Then it was Sierra's 2nd birthday!  We did a Minnie Mouse party.
In May Carter had a sleep study and we found out he no longer needed his bi pap to sleep or oxygen, so that was great news!  I also helped drive my sisters in law home from middle school a few days a week.  In June Chris turned 28, Carter went on summer break and did some annual appointments:  Shriner's for orthopedics, the dentist, and Neurology.  Carter was able to get a one time respite fund from DSPD (Division of Services for People with Disabilities) so we got him an aide through RISE, named Brenda.  I was nervous at first how this would work out, but she was great!  She took him 4 days a week for six hours to give me a break.  By this time I was big pregnant and really struggling carrying him.  In fact, the last month of preschool I had family help get him in and out of his wheelchair for school and my mother in law helped get him into bed at night as well.  She was amazing!
End of June my parents threw their annual Family Reunion/South Jordan Days.  We went to the fair, saw a parade and went swimming.  In July, Chris finished his class so he could be home with me for the baby.  My parents were going to pay for our air fare to go to the annual 1p36 Deletion Syndrome & Awareness Conference, but I couldn't go because of the baby.  My mom had surgery during this time and was recovering.  I was induced the night before I was 39 weeks, since nothing was happening to put me into labor.  In fact, Keaton was breeched for a bit but luckily turned.  I ended up being in labor for 22 hours before having him.  Don't worry, I had an epidural!  It was a long, frustrating process but everything worked out well and he was big!  Keaton Thomas Thorup was born at 6:33 pm on July 15th at 9 lbs 7 oz and 21.5 inches long.  He had a light red hair and was so cute and chunky!  
Chris was able to be home for two weeks from work.  Adjusting to 3 kids is still in progress!  Keaton is a super sweet boy and calm and happy.  We got lucky!  Carter's aide came back until the end of the summer when Carter started school back up.  He got a new teacher, shorter school day, new bus driver and a new school building with lots more room.  We took the kids to the zoo, the Aquarium and Wheeler Farm since we weren't able to do Lake Powell this year.  We got a new nephew named Kayson end of September, and that's about when we blessed Keaton.  Carter had his annual eye appointment and GI.  I had my own 10 year high school reunion with some close friends, mostly Heather's:) at Olive Garden.
In October my brother proposed to his fiancee Nichole- I already blogged about that with a link to the YouTube video.  Over 10,000 views now!  It was also on Fox 13 News.  Halloween was fun, we had a ward trunk-or-treat and made Carter a tractor/train.

In November we got another new nephew, Michael Logan.  We also had Thanksgiving at my parents which was nice and then had family pictures on both sides.  The one was a Christmas surprise for my family with all the grand kids, and the other was family pictures with the Thorup side. The pics are on the right sidebar if you want to see them.

In December Carter turned 5, although we didn't throw a party this year he still got visits and presents.  Then on December 13th Parker and Nichole got married- all 5 siblings are married now!  Then we had Christmas, which was wonderful.

It was a good year, busy and full of fun activities: showers, parties, Sunday dinners, baby blessings, swimming, new baby, appointments, visiting Grandma & friends etc.  Carter is in school and doing great.  He had his aide again for 4 days over Christmas break.  He lost his 2 bottom teeth and grew his adult ones and got a Kid walk this year.  He can stand for 30 seconds or so at a surface with no support.  He went from 5 meds to just three.  Only 1 seizure in the entire year.  He is growing well and got new nighttime diapers which helps:)  We had to have his wheelchair adjusted and get new daffo's because he is growing so big.  He is 75% in height and weight.  Sierra is 2 1/2 and so busy and smart but also a challenge at times.  She loves juice, babies, playing, her blankie, watching Curious George or My Little Pony, and visiting Grandma.  Keaton is now 5 1/2 months and has a helmet to help shape his head.  He can roll and tries to sit up.  This new year Chris is back in school, we will be moving and going to Disney Land in May.  Something always has to change:)  Looking back at this year I can tell how the Lord has blessed us and been mindful of my needs and wants.  I have tried harder at keeping and strengthening family relationships.  Happy New Year!!