Summer is Coming to an End

So, summer is coming to a close.  I have mixed feelings because I don't love the hot weather but I love the sunny days.  I'm also excited for school to start for Carter and Sierra so I can start focusing on Keaton's needs.  Just an update on things- I have another new nephew named Kyler, he is the 7th nephew for me.  Carter's new daffos are in at Shiner's, they are Batman decorated so I'm excited to see him wear them.  We went to Bear Lake for a day with the Johnson side, my mother in law's family.  My kids love water so they had a blast.  After one of our summer sensory friendly movies, I got into a minor car accident (my fault).  We are still in the process of fixing the van ourselves since the cost of the damages were close to what the car was worth, thence it was considered a total loss for insurance.  So, I've been borrowing my mother in law's van in the meantime.  I was without a car for a week or so.  The van has to pass inspection this month so crossing my fingers.  I hate car troubles!  We only ended up seeing 4 out of the 10 summer program movies because we missed the first week, and then the car troubles began.  Plus, Keaton had mini accidents every time we went so it just wasn't worth going anymore.  He threw a food tray once at a handicapped adult's head, oy!

We celebrated Keaton's 2nd birthday on July 15th!  We didn't throw a party because I was still processing his recent ASD diagnosis and with us living farther from family, I didn't feel like making everyone drive so far for it.  But, we had cake and went to the Clinton city fair.  Keaton had his 2 year check up and was 75% for height and about 50% for weight.  He is still seeing OT now twice a month and the developmental specialist once a month- we changed speech to every other month until he makes more progress.  I plan on adding feeding therapy back once school starts.  I also contacted the Children's Center in Salt Lake for their Play2Learn group; he'll start this fall or in January depending on space.  I applied for dspd (division of services for people with disabilities) so we'll see if Keaton qualifies right now for that- Carter is already on the list.  I also applied for ssi so there's a 4 month waiting period to see if Keaton qualifies- again, for now.  Things might and hopefully will change.  Keaton had some follow ups from his diagnosis appointment; he had a sedated MRI (brain scan) and ABR (hearing test).  It took up half our day but the good news is he passed both and was such a good boy!  His genetic test also came back normal.  It looks at certain areas of genes that are associated with developmental delays and autism to find possible causes.  There's a wiggly worm sensory processing class that I might sign up for as well in Salt Lake.   

 I finished a book called Bloom:  a memoir by Kelle Hampton that a friend suggested- it's about a mother's journey to acceptance and her grief process as she has her 2nd child and finds out she was born with down syndrome.  It was good for me to read because I still feel like I am processing Carter and his challenges as well as Keaton's now.  Carter has been doing good at home other than the occasional crying fit, but unfortunately we haven't been to physical therapy in July because of the car issues and being so busy.  It's hard for me to take all three kids and expect to focus on Carter.  I hope with school coming back he'll be able to regain any skills he may have lost this summer.  Carter will be in 1st grade, how crazy is that!  We've been school shopping for clothes, they outgrow their stuff so fast it seems!  Carter's horse therapy will be ending in the next few weeks as our scholarship ends- it's been a great experience, one I hope we can do again!  I filled out a mountain of paperwork to have Carter accessed just like Keaton was for autism, since I'm sure he's on the spectrum as well.  I should have done it years ago but didn't really think about it.  Having that diagnosis opens some doors for more services, but the wait to be seen is pretty long.  We are also waiting to hear if insurance approved Carter's new wheelchair- we ordered a zippy that will allow Carter to help push the wheels and have more independence.  It's been over 4 years since he got his first wheelchair and he's almost outgrown it.  It will be an exciting change!  

Sierra started an online preschool program through Waterford called Upstart.  We do it at home online 5 days a week for 20 minutes.  She has enjoyed it so far and looks forward to doing it.  She will start her 2nd year of preschool through Head Start soon; it will be 4 days a week for half a day.  We're also waiting on her speech assessments through Primary Children's and the University Assessment Clinic to address any concerns (possible appraxia) and possible adhd.  She is quite hyperactive for me at home and has trouble concentrating at times and falling asleep at night.  Her scores in preschool at the end of the year were low too, which could indicate adhd as well.  Part of it could be it's summer and everyone is here and things are busier, but the pediatrician has seen her twice and said girls exhibit signs differently than boys, so we'll see what the doctors say.  She starts dance next month, so I'm hoping that with the 2 preschool programs she's in and dance class, she will be able to tire herself out and calm down.  I just want her to succeed and not fall behind.

We went boating with my family at Jordanelle over the weekend, and it would have been so fun except it was so windy!  With 13 kids ages 7 and under, it was kind of crazy.  We got this cute picture of 10 of the kids in the relaxation station tube.  We were missing the three youngest grand kids.  Family is the best!

We just met with Utah Behavioral Services today to get approved for Keaton's ABA therapy, which I mentioned in my last post.  It's specific to kids with autism and focuses on praise and consistency.  Keaton does exhibit some behavior issues like tantrums over small things and needs specific ways to calm down as well as throwing things at people's heads and knocking things down.  I hope we can work on these things and work towards Keaton being more socially acceptable and age appropriate.  Right now my biggest frustration is that he isn't talking other than the occasional "uh oh" or "Momma" or "car" which we think is his way of saying "Carter".  Also, his throwing tendency has hurt Carter a lot as he is the main target and the objects or toys are heavy.  Keaton doesn't seem to understand "no" or "stop" or he does and just enjoys our reactions.  Trying to figure out Keaton will be a puzzle I think.

Besides just life and therapy and doctor appointments, family dinners, birthdays and baby blessings and the occasional escape to go out with a friend or have a play date...I am just trying to survive it feels like.  This blog is a great way for me to journal our activities as well as remember what's going on and express my feelings.  In this fast paced and technology driven world, we don't have enough time to just sit down and talk to people, have real deep conversations.  I care so much about my family and friends and kids that it sometimes feels like a full-time job just trying to keep in touch with everyone.  I definitely try to be a good friend and Mother and advocate for my children and research all the possible activities and things they can do that will benefit them, but is also affordable and feasible with my situation.  If I could, I would do a lot more than I already am but we can't run faster than we can walk.  I am trying to pace myself but my anxiety drives me to do more than I sometimes can, and then I end up feeling overwhelmed and take a day or two to recover.  Sometimes the simplest activity takes me a lot of time to consider and plan, that I used to be able to do fairly easily.  It seems like my capacity to handle things is getting lower and my threshold for noise and stress is also diminishing instead of growing.  I am pretty open about my feelings and issues and I have started seeing a counselor again to work through things.  I have so much free time to work on things, right?  Lol.

Anyways, thanks for reading, and always feel free to comment or ask questions!  The thing that gets me through the day is knowing how hard my hubby is working at his job and school, and how cute my kids are when they play together.  I often find Sierra and Keaton playing a game together giggling or Keaton and Carter playing in the same room.  That's my paycheck!

What's Coming Up:  Carter's yearly GI appointment, school starts for Carter and Sierra, dance starts, Sierra's speech assessment, Keaton's ABA therapy...

Also, now that the blog isn't just about Carter's journey with 1p36 deletion syndrome but also Keaton's journey with autism...ideas for a change of my blog title?  

Appointments, Summer Activities, Keaton's Diagnosis

Again, this will probably be a long post, so stick with it if you wish.  Carter had his sedated ABR (auditory brainstem response) test.  We got in fast and smooth and it went great.  Both ears passed all pitches, so that was a relief.  When a child that is non-verbal or doesn't respond or always pay attention, a regular sound booth test and such doesn't always work.  The ABR is accurate and efficient; the only downside is putting them to sleep.  We went to St. George mid May for 3 nights and stayed in my parents' home there.  Most of Chris's family went as well and stayed in nearby hotels.  We went to the St. George Children's Museum and the nearby park and splash park.  The next day we went to the main street splash park then walked around Snow Canyon.  We got a nice group shot.  We  had dinner together at the house, then drove back on Sunday morning with a stop at Cove Fort where we had a nice picnic.  The kids did pretty good on the trip.

Memorial Day we visited my Grandmother's grave and then went swimming.  Sierra had her last day of preschool and Carter his last day of Kindergarten.  I wasn't able to make the graduation because of short notice, but I don't think he would have cared anyway.  Every June, South Jordan Country Fest has a parade, fair, free swimming and fireworks with a concert.  My mom likes the whole family to come down for it since we grew up in South Jordan; we consider it kind of a family reunion.  This year several of us had things going on but we went to the parade and fair.  Hoof beats to Healing received a bunch of tickets to the Odysseo by Cavalia show, and Carter and I got two tickets to go see it.  The show was incredible and it was a neat experience, even if Carter was a bit of a distraction.  While we went, Sierra went swimming with Grandpa.  That evening Chris and I went to dinner for his 30th birthday.  We stayed the entire weekend with family because we had a baby blessing the next day.  It was a busy but fun weekend.  For Chris's 30th birthday, we went swimming as a family, it was pretty low key.  He wanted to focus on the kids having fun.  He got a bike so now we can all go biking as a family. 

For the summer, besides horse therapy every Wednesday, the kids and I have been going to the Megaplex in Ogden to see a sensory friendly kid movie every Wednesday morning.  So far we've seen Minions and Pan.  It has been interesting because Carter has been the best while the other two wander all throughout the theater and don't really pay attention to the movie, but it's still nice to do something different.  So far we have been by far the most disruptive people in the theater.  Oh well.  I think it's awesome places do things like that though, so you can do something fun without having to worry about how your children behave.  Keaton loves the stairs and the lights.  Carter had his yearly appointment at Shriner's to see orthopedics, and it was a little crazy with all the kids with me but it went well.  His spine and hips look better than last year, so he's doing good.  His left leg is slightly longer than his right, so something to keep an eye on.  Carter is still seeing physical therapy outpatient twice a month in Bountiful.  Keaton is still doing all of his therapy, and for one of his last physical therapy appointments, we met at Chloe's Sunshine Playground in Syracuse.  It was built for a child with disabilities, so you can push a wheelchair throughout the entire park, and it had two handicapped swings and a musical area.  It was pretty cool to try it out.  Keaton loved walking around, Carter liked the swings and Sierra all the slides.  I love finding new things to try up north, since we're still new to the area.  Roy library does sensory hour the 1st Saturday of each month, so I want to try that out.  Keaton's early intervention group had a play day at a park in Layton; there were activities to do and it was right next to a splash park.  It opened when we left, so we'll have to go back and try it.  Sierra had a sleepover with her best friend and 2nd cousin; they went swimming, had pizza and played together.  Even though they're still young, it was fun to see them have fun together.

Fathers Day was busy but nice; we let Chris sleep in and made breakfast, then had church and went to visit both sets of dads down south.  Chris is a wonderful dad to the kids; he loves being with them and even after a long day at work and school, he wants nothing more than to be with his kids.  My dad is also a wonderful dad, he is involved and loves us all, and now is the best Grandpa.  He has a special relationship with my kids and they just love him and look forward to seeing him and being tickled or wrestled.  We got our access pass finally, it allows us free entrance into the national parks because of Carter's disabilities.  The summer has been a bit crazy with all the kids home and trying to keep them all happy and entertained.  Carter gets bored and likes to 'attack' Keaton still, and Sierra demands a lot of attention.  Being a mom is definitely not easy, and things won't be getting any easier for us.  Besides Keaton's physical therapy fading out, he still sees OT, speech and a developmental specialist.  I was feeling very overwhelmed so I dropped the feeding therapy for now since it's outpatient.  One less thing to worry about.  So, many know that Keaton has been in Early Intervention for over a year now.  He is behind in almost every skill, but he is making progress.  He was a late crawler and walker, and so far only says a few words.  I have been worried about him for some time and have been watching things he does that didn't seem typical or 'normal'.  Was he picking it up from Carter?  Was I just being paranoid because I already had a kid with special needs?  I was doubting myself and questioning people around me to see what they thought. 

So, I filled out some paperwork to have him seen at the University Developmental Assessment Clinic in Salt Lake.  That's where we started with Carter, although it was a little different at the time.  They told me once they got the paperwork, it would be 3 months or so to even schedule us an appointment, which would then be a 8-9 month wait.  I was shocked to hear that, but determined to get everything in quickly so he could be seen.  I prepared myself that he wouldn't be seen until he was about three.  He already had testing done through Early Intervention and feeding therapy, which showed delays but gave no answers.  When we saw Dr. Murphy last month for Carter, I happened to mention a few things to her about Keaton.  She seemed a little concerned as well, and suggested I call the clinic again and see if they could push him up.  I did just that, and they said they were doing some new things and kids under 3 with delays and concerns would be seen sooner.  I was told that he'd get an appointment by August.  I was very happy to hear that, so I waited.  Just a week or so later, they called to schedule Keaton for an appointment.  We just had to wait 1 1/2 weeks to get in.  They are doing clinics once a week where you get to see all the specialists in one sitting and leave with a diagnosis or answers.  I left the other two kids home with Chris and just Keaton and I went.  We filled out paperwork for probably the first 40 minutes in a play room, then saw audiology.  Keaton had just had his post op appointment with ENT for his tubes that were placed, which looked great, but they weren't able to complete a full hearing test.  They tried again, and he did pretty good.  The age is hard because they won't stay still.

Next, we saw the speech pathologist.  She had me fill out more questions and watched Keaton play while she conducted her testing.  She told me she was concerned, obviously, because he wasn't speaking or using non-verbal ways to communicate.  She also got the chance to see him eat a snack, and was concerned with how he ate.  He wasn't using his jaws or tongue to move things around, he just uses an up and down motion.  She said he could have appraxia which is a type of speech disorder that causes trouble when making sounds correctly and consistently.  She also mentioned he could have dysarthria, which is a motor-speech disorder that makes it hard to use or control the muscles of the mouth, tongue, palate and vocal cords.  This can also affect chewing and swallowing.  She said since he isn't speaking much yet, she'd have to wait to see him again in 6-12 months to evaluate.  The main thing that surprised me with her visit, is that one of Sierra's speech therapists mentioned she could have appraxia, and I was told it can run in the family and is present from birth.  So, now I'm going to have Sierra see this speech pathologist, because not every speech professional is trained to diagnose appraxia or even work with it.

Then we had a break and saw the psychologist.  She was an older lady but very kind.  She interacted and played with Keaton and conducted her testing.  She explained everything to me and what she was looking for, and asked that I just observe unless he needed comfort, which he did twice.  She explained to me her concerns, and then we had another break before we saw the developmental pediatrician.  By then, we had been there about four hours and we were tired and hungry.  Keaton fell asleep on me while we talked, so she wasn't able to see him play.  But based off the information I gave her and what the others observed, she was able to see where he was at.  We went over his early intervention testing scores and some more questions she had.  Then she told me to wait while they all met together to discuss their findings.  We went to the play room once again, where another mom and her daughter was also.  It was nice to have someone else to talk to while we waited.  Keaton was an angel during this whole process; he didn't throw fits and was quite congenial.  We went back in to talk with the pediatrician, and she said they had diagnosed Keaton with autism spectrum disorder.  Their tests were all to see if he met enough criteria to qualify, and he did.  Yes, he is still quite young, but the benefit is we can start getting him more help now and be ahead of the game.  The doctor said she knows adults with autism and you wouldn't even know it.  She said right now, because of his speech issues and feeding problems, that he is rather high on the spectrum.  But that can change.  At the risk of writing a novel, I will leave it at there.

I was not surprised to hear the diagnosis, because it's what I was there looking for.  It validated my feelings and concerns.  Now we had a direction to go and things to do.  Not everyone that goes to the clinic is diagnosed.  It means Keaton will get more help in school and hopefully more understanding from those around him.  People might get confused with this diagnosis because he is cuddly and does make eye contact.  The spectrum varies and there are so many different types.  So what's next?  We might get an MRI to see if Keaton's brain has any abnormalities to explain why he is so delayed.  There's a 10-20% chance they'll find anything.  We sent off a genetic test to see if they find anything, even though it definitely wouldn't be Carter's diagnosis.  We also need to set up and start ABA therapy (Applied Behavior Analysis) which is specific to autistic children.  Thankfully they come to our home to do the therapy.  There are other resources and things I need to look into, but we have a good head start.  Technically, Keaton has 5 or more diagnoses:  autism spectrum disorder, severe expressive language delay, feeding difficulties/dysphagia, gross/fine motor delay and sensory processing difficulties.

What is Autism Spectrum Disorder?  It is a neurodevelopmmental disorder that is characterized by repetitive behaviors as well as difficulties in social interaction and verbal and nonverbal communication.  Some or all of these behaviors are present from early childhood and affect daily functioning.  It is important to keep in mind that ASD is NOT caused by anything the child's caregivers have done.  There is no cure, but therapy can substantially improve symptoms.  The term "spectrum" refers to the wide range of symptoms, skills, and levels of impairments in functioning that can occur in those with ASD.

If you have questions, feel free to ask me, I'd be happy to answer.  This is not something I'm trying to hide or be ashamed of.  Like my mom said, he's still Keaton.  The Keaton that loves to play with balls and bubbles and smiles and cuddles and does funny things.  I've gone through a range of emotions in the last few days, and I'm sure that won't stop anytime soon.  We'd appreciate prayers for strength and understanding and patience, as our current load seems extremely full, especially being farther from family and already having Carter and having him home during the summer.  I feel very thankful for the doctors and that we were able to be seen so quickly.  They are extremely skilled and trained as diagnosticians.  I am thankful for the answers and that I can feel more at peace.  Thanks for reading this and being a part of our lives!

What's next:  Carter gets new daffos (ankle braces and possibly a new wheelchair), Keaton's 2nd birthday, Carter's GI appointment, therapy therapy therapy...

Busy and thoughts

My brother and his wife had a beautiful daughter named Tavia, and Sierra was so excited to go with me to meet her!  Darling little thing with lots of dark hair.  Sierra's swimming class ended, it was only four weeks but she really enjoyed it.  Carter had his sleep safe bed extended for safety, because he's getting so tall.  With the mattress on its lowest setting and the side up, he was getting close to being able to fall out.  We're thankful for insurance and National Seating & Mobility for helping us out.  Keaton had his ear tubes put in; we had to be there really early.  He wasn't too happy when he woke up, but it was a quick procedure.  He had an ear infection in his left ear that they cleared out and fluid.  The funny thing is, he hasn't acted different like he hears any better.  His post op appointment and hearing test is beginning of June, so hopefully it will show he's hearing well.  Keaton started OT with a great therapist that comes to our home and speech therapy.  Combine that with his feeding therapy and developmental specialist, and I'm feeling a bit overwhelmed with appointments and to-do activities.  We tried a bunch of water beads for sensory play and he loved it!  Problem is, they ended up everywhere!  

Keaton is pretty delayed in most areas of development, which is concerning to me especially as the mother.  While I feel like I'm doing everything I can and should, I don't feel up to the task.  And it feels a lot like deja vu.  I've done a lot of this before with Carter, but it's different this time.  We don't know why Keaton is delayed or if he'll just catch up and be fine.  I admit to giving in to feelings of feeling bad for him and myself and wondering why I have to go through this again.  Wondering what I did wrong and getting tired of peoples' stares and questions.  He'll be 2 in 2 months and all he says is 'uh oh' and still walks slow and slightly spread out.  I turned in paperwork for Keaton to have a developmental assessment at the Children with Special Needs Clinic; they said he should be seen by August.  In the meantime, he is doing some good things.  He is using his teeth/jaws more when chewing food and playing with food and trying new things.  He is really good with a ball and likes walking on different kinds of terrain.  He is sleeping better at night (knock on wood) and napping well.  He is attending to tasks more and paying attention.  I sure love his huge smiles and cuddles.  No matter what, I love that little boy fiercely.

Miss Sierra celebrated her 4th birthday!  It seemed to last an entire week because her birthday was on a Monday.  I was a mean mom and took her to the pediatrician (3 shots ouch!) 50% weight and 80% height, then had cake/presents, and Daddy took her to Layton's Surf n' Swim to ride the waves on tubes.  The next day, she went to Grandma Devey's for a sleepover.  They went to the mall and she went to Build a Bear where she made a pony named Brownie.  I was surprised at her choice but thought it was cute.  She had such a fun time playing with her Grandma and cousins!  Thursday she took cupcakes to her preschool class where they sang to her, and then Friday was her birthday party.  We had a tea party with dolls at Gardner Village's Georgell Doll Shop.  We had a room reserved just for us (so cute!) and just her girl cousins were invited.  They had 'tea' (strawberry lemonade), sandwiches and cupcakes.  We played Tea Bingo, pin the teacup on the doily, took pictures and opened presents.  The girls were fascinated with pouring their 'tea' and walking around the shop and outside.  It was the cutest and most feminine party, perfect for my princess!

 Sierra had her last day of preschool and is still doing speech therapy.  She has articulation issues and perhaps more, we're not sure yet.  I haven't liked her first two therapists, so we're waiting to see another one at Primary's outpatient clinic.  She's such a big helper and a great sister to her brothers.  She loves to pretend play with dolls, ponies, anything!  We visited Wheeler Farm one evening and got some cute pictures of the kids.  They loved riding the wagon.  She mostly says "play with me!" and "You're my best friend".

Mother's Day was a quiet affair- I slept in a little and Chris made me breakfast and gave me a card with gift card.  We had church where the Primary kids sang (Sierra loved being up on the stand), and then dinner at Chris's mom's house.  I had brunch the Friday before with my mother in law, her mom, and my two sisters in law (the younger 2 were at school).  Keaton's physical therapist told me about a gym that might be fun for him while also working on his development, so we decided to go and try it out.  It's called Lil' Flippers Gymnastics & Gym.  They have a mom/kid class for the littles and then Sierra joined the older group.  Keaton wasn't able to do a lot of what they do, but perhaps with time he will.  They did a few courses with trampolines, slides, crawling on ladders and through tunnels etc.  Sierra loved her class; we'll have to go a few more times!  We got our family passes to the zoo (thank you Angel Hands Foundation) and to the Tree house Museum in Ogden (thank you Head Start).  We tried it out last month with some cousins, it was pretty cool.  Carter is still enjoying his horse therapy every week.  He has just a few more weeks of Kindergarten, then it's summertime.  Oy.  I'm planning on doing some outpatient PT to keep working on his skills during the summer.  The last few movies we've seen were Batman vs. Superman and Captain America Civil War.  I have some great books on my nightstand (when I have the time to read).

Carter's been having some crying spells at school and home, and we haven't quite figured out why.  He's also been waking up some at night crying and waking up Sierra. We have been trying some Clonidine in the mornings and feeding him a little more often to figure it out.  We saw Dr. Murphy today and Carter is probably really hungry- he was only in the 20s for weight and in the 60s for height.  We are increasing his food to help him gain weight, and perhaps that will help with his crying spells.  She also suggested when we get a new wheelchair this summer (he's had his for 4 years), that we could try one with big wheels to see if Carter could help propel himself.  Cool idea.  The social worker came in to give us some ideas on summer activities, although it's pretty hard with just me and the three kids going out.  Carter failed a hearing test at school, and USDB didn't have any success at getting results from hearing tests, so we took him to audiology and he still failed the tests and sound booth.  So tomorrow he's having a sedated ABR; it's been 4 years so I hope we haven't missed anything.  It's really the only way to get full and accurate results.

I don't know if it's summer approaching that has me nervous or what, but I've been really struggling lately with the kids.  Between all the doctor/therapy appointments, worrying about Keaton and Carter, and trying to keep the house clean and going and the kids happy and fed...I've been exhausted.  Not just physically, but mentally and emotionally.  I feel drained, depleted.  Even just going to the store by myself, the logistics of it are tricky.  Carter has to be lifted and Keaton still clings to me.  I have felt like not many can understand my particular situation, and it's isolating.  Being farther from family has hit me too, and I feel like my support system is quite small.  I have been angry and frustrated, which hasn't made me feel any better.  But I decided it's ok to let myself feel like this, because I can't always be happy or content.  Motherhood is hard, and I do have some unique situations on my hands.  I am overwhelmed and quite busy.  It's easy to see my failings and berate myself every night.  But I guess the point is, I keep going.  I keep trying.  And I sure love these kiddos of mine, even though I'm pretty sure I will go crazy any moment now.  I don't rely on my Heavenly Father much, because I tell myself I'm strong enough and I've got this.  Plus sometimes my bitterness blames Him for my circumstances.  But when you see the fabric around you crumbling, it's time to start asking for help.  And to humble yourself.  Stay tuned, if you dare, for my progress.

What's coming up:  Carter's sedated hearing test (tomorrow), weekend trip to St. George, Carter's outpatient PT appointment, Sierra's outpatient speech consultation, SUMMER, Chris's 30th birthday and Father's Day.......

LIFE

A lot has happened since I last blogged, so this might be a little dense.  We had Valentine's Day which was uneventful because of being sick, but the kids got cute Valentine's and I helped with Sierra's preschool party by having the kids decorate heart sugar cookies and play bingo.  Then we had our 7 year wedding anniversary, and we went on a date.  I got a cute eco flower bouquet and got Chris a month pass at the indoor shooting range nearby.  We were able to go on a nice date.  Sierra and I went swimming at the Clearfield Rec Center and we all visited the zoo, still a bit chilly that day.  Time sprung forward and yay, spring time!!  More walks outside and playing in the backyard.  All the kids saw the dentist, and it was the first time Sierra had x-yrays, a full thorough cleaning and fluoride, and she did it all!  I was so proud of her.  Tax return time is also great, we bought a new couch which was very needed.  Our old one was so worn out and falling apart.  We also had the carpets cleaned in most the house, got a giant banana rocking chair for Carter, and a mattress for Sierra, and mounted our TV on the wall for safety.  Sierra is now in a big girl bed which she loves!

 









We were all sick for awhile which wasn't fun- we got a stomach bug that was passed around, and then Carter got influenza from school we think.  It took him about 1 1/2 weeks to get better.  He lost 4 pounds in 2 weeks which was 10% of his body weight, so that was kind of scary.  Thank goodness for Pedialyte, his G tube and his sweet temperament!  Keaton started walking which is just wonderful!  I honestly didn't think it was going to happen as his 2nd birthday is approaching.  He still will crawl occasionally, but he is doing great!  Easter was a beautiful day, we got some cute pictures of the kids even though just Sierra and I went to Grandma's and her Easter egg hunt, since Carter was still sick and Keaton had a cold.  

Sierra started talking time once a week, which is a speech program with 5-6 centers that have games, that meets every Tuesday after preschool.  I go with her and work with her along with the speech therapists there.  Her main issues are articulation and baby talk, as well as her l's and s's.  We also got a family membership to the Tree house Museum in Ogden, it will be fun to check it out!  April has been a busy month because Sierra started swimming lessons twice a week and Carter started horse therapy in Bountiful.  I'm so glad I found a place for him, and even better, it offers scholarships!  He goes every Wednesday after school and just loves it!  It's called Hoof beats to Healing and they go to Bountiful once a week but is based in Saratoga Springs.  They use Missouri fox trotter horses that mimic a crawl in their gait.  Crawling is an essential learning skill as well as mapping for the brain because it connects both hemispheres.  So far Carter loves it!  They even let Sierra take a turn.  Jon & Jill had their first baby, a boy named Porter, my 6th nephew!  It was fun to see and hold him.

 We renewed our family membership to the zoo through Angel Hands Foundation, with a donation for them to auction.  They believe in paying it forward which is great.  Keaton has had multiple ear infections, and combined with the fact his speech is very delayed, he is getting ear tubes on the 22nd.  I'm hoping it will help him hear better if there is fluid trapped in there so he can make progress.  He also started feeding therapy at an outpatient IHC clinic because he isn't properly using his entire mouth when eating and is very picky.  They gave us a Nuk brush to use to help stimulate his mouth muscles for eating, and suggested we try licorice or slim jim's to strengthen his jaw as well.  Feeding issues usually go hand in hand with speech delays because it all involves the mouth.  They said it's good if he plays with his food and is exposed to as much variety as possible.  I had his yearly early intervention meeting today that involved a lot of questions and testing to see where he's at.  They said he throws things a lot probably because he gets distracted easily or doesn't know how things work.  We still definitely have things to work on in the speech, feeding and functional play areas.  I'm just so glad to see him walking!  At least I know he's making progress in one area.  He loves to swing outside with Sierra and go on the slide.  Right now he's getting his 2 year molars, so he isn't the happiest.  Plus we've been so busy lately he just gets dragged around with us.  We lost an aunt on the Thorup side this week quite unexpectedly.  It makes me grateful for families and all those that are in our lives.  I hope to make more time for those special people in my life and to keep involved with them.  We also had the benefit of Women's Conference and LDS General Conference this month.  Downton Abbey came to a close which was sad, but Call The Midwife is back and soon Reign and The Mindy Project:)  Also keeping my nightstand stacked with wonderful books!

Coming up:  A new niece, Keaton's ear tube surgery, Sierra's 4th birthday and a tea party with dolls: girls only!  

Things I want to do: Take a sign language class sometime and a parenting class The Incredible Years ages 2-8 which covers:  setting boundaries and appropriate discipline, setting expectations, nurturing their social/emotional needs, praise/incentives and more!

Holidays & New School, Challenges

I realized I haven't posted for like three months, so I'll try to catch up.  Thanksgiving was small for us because Chris and one of the kids were sick, I forget which one now (lol), so we stayed home and had Thanksgiving together.  Since I don't cook, we just ordered out.  It wasn't the best day ever, but I admit I am kind of a Thanksgiving scrooge.  It's just not my favorite holiday.  Carter turned 6 in December, we just celebrated with our small family since he doesn't care for parties and can't eat cake.  I decorated his wheelchair for school.  Then of course came Christmas, and we were very blessed.  Someone did the 12 days of Christmas for us which was a lot of fun to look out for, and someone dropped off 3 wrapped gifts, not marked, one for each child; and we had a secret Santa give us a gift card so we could buy presents for the kids.  I was extremely grateful because Christmas is usually a hard time of year for us financially, with no bonus or anything.  Our kids are still young so they probably wouldn't have cared, but it's fun to spoil them.  We spent Christmas Eve with the Thorup side, and Christmas day we visited both sides.  The kids were spoiled and we all had a great day.  New Years Eve was quiet, we're not the party type especially with little kids.  

2015 was a big year for us- we went to Disneyland for the first time with our kids (except poor Carter) and bought our first home.  With those changes it has also brought one more big one, and that was Carter transitioning from Utah School for the deaf and blind to the Davis district.  One of my big concerns when we moved is that the district wouldn't have what we wanted.  Jordan school district was awesome and it was hard to leave it, where we both grew up.  After looking at our home school up the street, we settled on Carter attending Kindergarten at Parkside Elementary, just 3 minutes away.  Our biggest frustration has been transportation, but finally we have everything settled (I hope).  It's a long story, but Carter was approved to attend Kindergarten all day and have transportation back and forth, since it's in his IEP.  His teacher is great and so nice, and it's great it's closer to us now.  There are 11-12 students with 1 teacher and 2-3 aides.  He seems to be adjusting well, and they got him a push walker to work with again.

I turned 30 last month on the 30th, and I was lucky to have a girls overnight trip to The Grand America Hotel in Salt Lake the weekend before.  It was so much fun and so needed!  My mom is great at putting things together, especially just us girls.  It was my mom, myself, my two sisters, and two sisters in law.  We had two adjoining rooms, had dinner at The Cheesecake Factory at City Creek, shopped, hot tubbed, took pictures of course and more shopping.  When we turn 30, my mom also gets us our own Minky Couture blanket.  Mine matches Sierra's, which she thought was fun:)

We also have a close 1p36 family to us that generously donated to us their son's old walker.  Carter was excited right away to see it and use it.  He's standing a lot now at surfaces, especially the sink and stove.  He is a bit more mobile, which is actually a little frightening.  At the same time, Keaton who is 18 months, is getting closer to walking as well.  I call them my 'twins' because they are at the same stages in so many ways.  They play with a lot of the same toys, even fighting over them.  Our biggest challenge with Carter right now is that he loves to 'hug' Keaton so much.  He will give him a great bear hug but won't let go.  It's frustrating for us because he doesn't understand 'no' and seems to feed off of Keaton's cries.  He will go for him and hug him multiple times a day, so I feel like a referee.  It's also frustrating because Keaton could get away but doesn't even try to.  Carter also loves to pull hair, and will do it on purpose to his sister.  These behavioral issues aren't huge yet, but ones I am definitely not a fan of.

We've lived in our house for over 6 months now, and probably with the winter making things harder to get out, I have felt isolated and more shut in.  I feel like we are not as involved with our families as I would like to be.  It's hard not getting the breaks or help like I used to.  Now any errand I run has to be done while Carter is at school, or I just have to deal with all 3 kids by myself.  I can't wait until Chris is done with school, so he'll be home more.  I think the winter blues have certainly kicked in.  The kids are more emotional and difficult, my patience is thin, and I am not getting that help I used to, to help refill my bucket.  This move has been hard on me, and sometimes I question it.  I'm trying to just be thankful that we got a house.  Our family is just an hour away, not states away, but still...I think what keeps me going right now is Downton Abbey (which is ending soon), reading other mom blogs, and The Bachelor.  Let's cheer for spring!

Our ward has been great with Carter and I've made a few friends, but these things take time.  I have a neighbor that is always willing to help which is wonderful.  I think sometimes we get lost or it's hard to find purpose in things, and I think that's where I'm at right now.  I have a hard time with Carter's behavioral issues or why he does things the way he does and why we can't communicate, and why it's harder for me to get things done or go anywhere, and we don't have family close etc etc.  I have hard days as a Mom, I know everybody does, but it seems like mine are more frequent.  Having a child that needs me so much while my toddler is not a great napper or sleeper and is super clingy, while having a special needs kids- it's rough.  Trying to balance it all is a skill I have not perfected yet.  Trying to find time for Carter to use his walker, while working with Sierra on preschool things (she is struggling with recognizing her name and writing it herself, among other things), while trying to find time or energy to work with Keaton on walking, eating new foods and language skills.  It's all just a lot of work, and some days it's just easier to not do it.  Motherhood is a big challenge and responsibility, but especially when your kids have additional needs.

Coming up:  Valentine's Day, our 7th wedding anniversary & a new nephew:)

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!

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.