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Thursday, November 13, 2014

IEP

Carter's IEP was last Friday and I dread and anticipate these meetings.  I was excited to hear how he does and if he could stay at USDB.  At his last meeting they reminded me it's the goal and law to continue their education in the least restricted environment possible.  But of course, whatever is best for the child.  This meeting was much smaller as his speech and physical therapist were not present.  The director is new as well so I got to meet her.  We discussed Carter and compared him from last year with his goals.  His physical therapist usually sets a goal to improve by 5% and he did by 12%.  She left notes about how well he is doing in his walker and is using a more appropriate crawl at times.  She said if Carter receives help with getting up from his knees to standing, that he can stand for over 30 seconds at a table or surface.  It's amazing how far he has come in strength.  Then we discussed her new goals for him in the next year.  Then the speech therapist phoned in and talked with us about him and her goals for him.  Based on a questionnaire Carter would do best learning print instead of braille, so she wants to use pictures to communicate with him.  They tried a communication device that also talks but he didn't seem to like that.  She said they will start using pecs, a communication system, with up to 10 pictures so he can come up and pick what he wants from the pictures.  The idea is to work up from there to more pictures or to where he can pick it out himself without prompts.

The PECS Approach
  • In Phase one, the trainer (therapist/me) works with the learner and their caregivers to figure out what might be most motivating to that individual learner (a ball, toy, food, etc.). Cards are created that picture that motivating item, and a pair of trainers helps the learner discover that, by handing over the card, they can get the desired object.
  • In Phase two, the trainer moves farther away from the learner, so that the learner must actually come over to the trainer and hand over the card. This is a life skill lesson in seeking and obtaining another person's attention.
  • Phase three requires the learner to discriminate among multiple pictures when requesting an item. For some learners this is easy, for others it's tougher. Some learners learn best with photos, and others with graphic images that approximate the appearance of an object.
His speech therapist seemed very pleased and surprised with how social and engaging Carter has become over the last year.  He comes up to you immediately and engages with eye contact, touch and noises.  You can tell by his facial features that he is usually excited to interact.  She couldn't believe how much he has changed.  His teacher Athena is new, she's had him just since school started end of August.  Her background is in vision and she said she considers Carter's vision to be a strength now instead of a weakness, which is her goal.  She went over her goals for him which include vision/compensatory, cognitive/social and communication.  One of her goals is to get him to recognize his own name in print, which is a good thing to learn for Kindergarten.  His OT works on his fine motor and he discussed how his grip strength is better.  He is going to work with Carter on stacking objects, simple puzzles and taking things in and out.  He still needs help with that.

It was a consensus that Carter continue attending USDB, but his teacher said she thinks he'll be ready to move on fairly soon.  I don't know when that means.  She said he hates art and as soon as he sees the picture that it's time for art, he'll try to take off.  So funny!  He struggles having to sit there and attend to something when he doesn't want to.  She said he gripes less but still doesn't like it at all.  As soon as the classroom door is open he tries to take off (he does this at home) and one day she decided to let him 'escape' and followed him.  He went into the boy's bathroom and was making noises because it echoed.  Funny.  He is always going in our bathroom at home and I wondered why.  He loves his classmates especially Emma.  He gets sad when she is gone.  The teacher has noticed them actually play together, which is another one of his goals to play more with his peers now that he is interacting so much more.  He even lays by them when he's tired or not feeling well.  She has him walk distances in the walker, like to the gym or front office.  He loves when the high school students visit twice a week.  They also cook something once a week and he loves to help mix she said.  Even though most the kids can't eat, they still play with food for sensory play.

I enjoyed hearing her comments about him and how well he has improved.  I am so grateful he can attend school there with trained professionals in a smaller classroom, in a huge room where he can move around and play.  He is growing so much, although to the casual observer perhaps not so much in the sense of walking.  But he is getting there, he is building strength.  If you hold his hands he will take steps.  I'm so pleased with Carter and I love that he enjoys going to school.  Heaven knows I need the help and don't have the time to help in all the areas that he needs.  He had picture day this week so pictures will be forthcoming.

Thursday, October 23, 2014

Update

Carter saw the eye doctor and he said his vision is well enough that he doesn't need glasses.  He still is visually inattentive and possibly has cortical visual impairment.  This should help with his IEP which is in a few weeks.  I want him to stay at USDB for Kindergarten if he can.  He also saw GI and he's in the 60-70% for height and weight, can't remember exactly.  But his BMI is almost perfect the dietitian said.  So, I guess we're doing something right:)  Carter has school pictures coming up in November, I like to see how they turn out.  Halloween is also coming, and we are hoping to turn Carter's wheelchair into Thomas the Train.  Pics will be posted of course.

Keaton is 3 months old and loves to try sitting up.  He loves starting at ceiling fans, his siblings, and being kissed.  He still only naps in his swing, if I get him to anywhere else it isn't for very long.  He still wakes up 1-2 times at night.  He had an ultrasound done on his abdomen because when I was pregnant the ultrasound showed white calcifications.  They thought perhaps a gall stone and told me to follow up when he was born.  He had to fast for four hours which was hard because he eats every 2-3 during the day.  Well, it went well and nothing was seen.  I have noticed for a few weeks now that his head is flat on one side, because he favors it.  I tried laying him on the other side or when he was asleep turning his head the other way.  Apparently it wasn't enough, because the craniofacial doctor said he needs a helmet at 4 months old.  He said they wouldn't normally say yes at 3 months of age but he was an 11 so over the norm according to measurements.  His forehead is bigger on one side so it makes his ears uneven.  I'm very bummed about this because it will be right during the holidays.  Carter did fine with his, so hopefully Keaton will too.

Sierra is 2 1/2 and so busy!  She is talking more and putting two to three words together easy.  She loves to say "thank you, you're welcome" and "what you doing".  She loves apples, strawberries, milk, tortillas, chicken, rice and green beans.  We are reading her potty books still and she loves sitting on hers.  But she is still very wet during naps and at night, and doesn't help with dressing or un-dressing, so I'm waiting a little still.  I think her naps are ending soon, because there are days she doesn't take them and just plays in her room.  Part of me is very sad for that, but it means Keaton will be able to nap in the crib soon (I hope).  We are planning on putting Keaton in Sierra's room in the next few weeks.  She is a good sleeper so I just hope they both do fine with it.  I haven't had my kids share a room before.  My kids are early risers and Daylight Savings is coming.  Not excited about that.

We blessed Keaton on Sun, September 28th with family and friends.  He was a good boy and it was a nice day.


Life is busy and stressful and hard and fun as a Mom of three.  Some days I think I'm doing it right, others I think I'm messing it all up.  We went to Wheeler Farm last week and had some fun.
My brother proposed to his fiancee by putting together a lip dub with family and friends.  We practiced for about a month, kept it a secret and came together on Sat, Oct 18th to do it.  Fox 13 News was there and it's now on YouTube as well.  It was a fun experience, there was three mascots there.
Parker's Lip Dub Proposal

Fall is in the air and change is as ever present.  My new mantra is THIS TOO SHALL PASS.

Saturday, September 6, 2014

Back to School!

Carter started his last few months of preschool up again last Wednesday at Utah School for the Deaf and Blind (USDB).  This is his second year and there are a lot of changes for him  His teacher is new, his school is in a new building (much bigger and further east), he has a new driver and the time has changed.  When I heard that his teacher changed I was very sad because we loved her.  I haven't had the chance to meet the new one yet since we were informed just days before school started.  I hear his classroom is much bigger so he has more room to explore, which is good.  His driver Kent is really nice and he still goes in his wheelchair back and forth.  He is picked up at 7:55 and dropped off now at 3-3:10.  It used to be 7:15 and then around 4, so it's shorter by like two hours now.  They feed him only once now instead of twice, so that kind of threw me off for the first while.  Their theme for the month is back to school peanut butter & jelly, so they have been playing with it and making stuff too.  Since Carter can't eat he just plays with it.  They still have music time and therapy, which it sounds like he has been kind of ornery with.  He has seen his old teacher and she said he recognized her and wanted to go with her, which is sad.  Poor guy.  I don't know that he understands why people aren't there anymore, like Brenda, who was with him all summer but is now gone.  We still keep in touch via email.

The first two days of school Carter had a meltdown after getting home.  Not sure why but he hasn't done it again.  We noticed a couple of weeks ago that he was shaking a lot and seemed scared of some of his toys.  He got a really scared look on his face when his bear started singing.  That was unusual, so we tested his glucose to see if it was low but it was fine.  Then about a week later, he woke up one night crying and moaning very strangely, a sound I hadn't heard in awhile.  When he used to have seizures he would sometimes make that sound like he was scared of something and he would shake.  He was doing that but I didn't notice any seizures.  I'm still not sure what caused it.  I have noticed he seems a bit shakier overall from time to time.  Might be something for us to figure out.  Carter has his yearly GI and eye appointments this month, then hopefully we are good until next year.  His 2 bottom teeth have been coming in good- they have those nice serrated tops that his baby teeth don't have because he grinds so much.  Carter's oxygen concentrator and tanks were finally picked up because we don't need them anymore.  So nice.  We still own his bi pap machine so we cleaned it up and packed it away for now.  I love seeing progress.

Carter has been watching us eat a lot lately, like he's really paying attention, so I was curious if he was interested in the food or just what we were doing.  So I tried giving him some pudding today, and he smiled but flinched and turned away when the spoon got close to his face.  It's not something I want to force but I was curious.  He turns 5 in just three months and I had hoped he would be walking by then.  He will stand and even walk some if you help support him, but still has trouble keeping his head up.  I haven't really ever pictured him walking and to be honest, I'm not even sure if he will be able to walk totally on his own.  I think he can with support or a walker, but I don't know about all by himself.  Of course that would be incredible but I kind of keep my expectations low or more realistic so I don't get disappointed, while still giving him the opportunities to do what he can.  

Sierra is 2 years old and about 5 months, so I've been thinking about potty training her.  I bought her a toilet before Keaton was born, my mom bought her panties and I just ordered some potty training books.  I've been reading up on the signs of a toddler being ready and I don't think she is quite there.  She still needs to have periods of time during the day where her diaper is relatively dry, she needs to be better at sitting still, she needs to help put her pants on and off, and I need to see her interest and more awareness of messy diapers.  I want to start reading to her about it and see if in a few months she will be ready.  They say if you do it too early that it will just take longer.  She drinks a lot too so I want to switch her to eating more.  With her still being a bit difficult and acting out, I think it's best we wait a little bit anyway.  She is putting two to four words together when she talks, but I'd like her to communicate a little better with me.  She follows directions pretty well and seemed interested in the toilet, but mostly because it made music when you flushed it.  Lol.  

Keaton is 7 weeks 4 days and getting so big.  Whenever we are out people think he is like 3 months old or more.  He's still in 3 month clothes and acts small still.  He is pretty even tempered and sweet and has started to smile, coo and laugh some.  It takes some work but he will get there.  He likes to wiggle on the floor and look around and receive lots of kisses from Sierra and me.  He is still sleeping pretty good and seems to be strong with his grip and lifting his head.  He has rolled to the side a few times now.  He can see really well now and follows me when I leave his sight.  I can tell he likes my voice because he smiles the most when I come into his vision and talk or sing to him.  He is very cute- we still aren't sure if he'll be blonde or have strawberry blonde hair like me.  I see a little bit of me, Carter and Chris in him.  He is a good mix of everyone.  We are blessing him this month so I look forward to that.  I have two sisters in law having baby boys within the new few months so that's exciting.  Anyway, that's it for now!

Monday, August 18, 2014

Some venting

I don't have a specific topic in mind but I wanted to write anyway.  We upped Carter's calories with his Pediasure because he hasn't gained weight in awhile.  He starts preschool next Wednesday, which I'm sure he'll be excited about once he's back there and sees his teacher and friends.  He has enjoyed his summer with Brenda- she helps him color, walk and play with toys.  It has given him somewhere to go and new things to do.  Carter has a cold right now so is fussier and he gave it to the other kids.  Sierra deals with it well, but the poor baby has been congested and has made for a little bit more sleepless nights.  I think things have been catching up with me, I'm getting more tired and a bit ornery lately.  I think once you've gone without enough sleep for enough time you think you're used to it, but then you hit this spot where you start to get ornery about it.  At least I do.  Who doesn't love sleep and function better with it, right?  I love having Keaton, he is such a good baby, but it still wears on you.  He does love being held, which baby doesn't, so by the end of the day I really need a break.  I am changing like 15-16 diapers a day between the 3 kids and let's see...4 meals for Carter, 3-4 for Sierra, and about 8 for Keaton.  Once you add everything up just getting through the necessities of a day starts to sound a little depressing.

I think in life it's normal that the day to day stuff just starts to bum us out.  We have our routines and such which is normal and necessary, but as a Mom sometimes it just gets a bit much.  I know I have a newborn so it's expected, but I guess I'm at that point I wanted to vent a little.  My post partum depression has gotten better as I've bonded with Keaton and gotten to know him more.  But I still have my hard days like lately, or get stressed or bummed out.  I tend to let my mind run with me once I'm bummed out which only makes it worse.  I start to compile lists in my head of things I need to do, or worries about the future and things that I wish were better or that I could change, etc.  I start getting down on myself for not doing better, and think about potty training Sierra or thinking I should do more with Carter and then I just start feeling tired, which I already am...you know, that pity party roller coaster that gets nobody anywhere.  But we all do it sometimes, right?  I'm not trying to make anyone feel bad for me, just like to express and share stuff.  I'm a girl:)  Chris will be going back to school in 2-3 weeks so I know that is coming, which means things will only get worse.  I joked with a friend that I will probably start drinking then.  Seriously no, but I foresee a lot more Dr. Pepper in my future and tears.

Sierra has definitely been in her terrible 2's which has just added to things.  Keaton will be good one day but then she is terrible.  Or vice versa; guess that happens once you have multiple kids.  I've had a few mornings where all three kids are crying and need something.  Fun.  I've had to learn to move faster and multi task even more.  With Sierra when she can't communicate to me what she wants/needs I try to get her to show me.  It doesn't always work, but at least we are trying to solve the problem.  She likes to scream a lot, hit, spit and throw things.  We are trying to be consistent with time outs and listing consequences.  I have no idea if she is listening or learning anything, but we have to do something.  I try not to get frustrated with her but it isn't easy.  Some days I wonder why people even have kids.  Oh boy.  I tell people I had kids just so I will have grand kids one day.  Haha.  I hear it's the reward and so fun so I look forward to that:)  Don't get me wrong there are great things with kids, but it's not all rainbows.  Let's not kid ourselves here.  I have a disabled kid, a terrible 2's and a newborn- that speaks for itself some days.  It's hard as a woman and parent to not get down on yourself at the end of the day and think I can do better or should have.  But thankfully, we get a new start everyday and hopefully it will be better and easier.  Sometimes it won't, but I have chocolate and Dr. Pepper for that.

I've also realized something about myself over time- that I have high expectations for people in my life.  It's not the same for everyone and it can change depending on my mood, but I do.  I say it's because I would do it for them, if that makes sense.  I feel like I have a lot to offer and am willing to do for those I love, even if never given the chance, so I expect it of people.  There are friends I expect little of because I understand their situation, and others I've learned to not expect much because our lives are in different places.  I have to be realistic so I don't feel let down.  But with family, I do expect a lot.  And most of the time, we get a lot.  With Carter being disabled and the new baby I felt like we should be the top of every one's list.  I don't know if that sounds cocky or weird, but that's how I felt.  We can't have anyone babysit Carter because of his feeding and meds, and with a newborn you should expect more help.  I have received a lot of help and have recognized and been thankful for that, but it's been hard still.  With summer people have had vacations and other obligations, and sometimes communication isn't always understood how you thought it would be.  I try to make my expectations clear so people don't have to read my mind.  It was hard too because my mom had surgery and her own things she needed to deal with, which is understandable.  When I had Sierra I really wanted the time to bond with her so we had help with Carter everyday for like two months.  I've had help with Carter because of the funds we received, which is huge, but I wanted help more with Sierra so I could focus on healing and the baby.  It has worked in some ways and not in others.  I've had to tell myself to be grateful for what help I've received and to move on.  

I've had some family relationships that I've had to kind of cut off and step back from for awhile, possibly indefinitely.  It was sad to have to make that decision but it sure helped with my stress.  A quote on Facebook inspired me because it said, "Either you invite drama, cause drama, or associate with people that cause drama..."  I don't remember the rest, but I realized I needed to not associate with certain people because of all the drama.  I'm not saying I have never caused drama, I have, but certain people certainly were causing a lot that was unnecessary.  It was hazardous to my well being and life.  I had a friend on Facebook that reassured me in my decision, and even though it still doesn't make sense to some family members, it was the right decision for me.  I believe that families can be forever, but I focus more on my family of five in that regard.  Our extended and even more extended family relationships are also important, but not as much.  So when I decided that, and focused more on my own family of five, I have felt much better.  Anyway, instead of venting anymore I am going to go hold my baby boy and count my blessings so I feel better.

Thanks for reading!

Sunday, August 3, 2014

Momma of 3 and Real Stuff

So Chris went back to work this week and I was a momma of three on my own.  No, not quite.  Since I am still healing from childbirth I can't lift anything heavier then the baby for six weeks.  Now, you tell me how that is supposed to work when you have a 4 1/2 year old that can't walk or do anything for himself.  So, once again I've had to enlist the help of my mother in law who lives across and over the street.  When Carter gets up in the morning, I call her and she comes over to get him out of bed and dressed.  Then she watches the kids while I feed Carter, do his meds then get myself ready for the day.  I have no idea how I'd be able to do that all by myself yet.  Once everyone is dressed and ready she goes back home until I need her again.  Carter's CNA Brenda still comes at 10 then drops him off at 4, giving me 6 hours from having him as well.  He will be starting school back up at the end of the month, and that might be tricky as well depending what time his bus comes.

My mom was able to help me two days this week with Sierra, and then my sister in law Heidi helped some on the other two days.  My mother in law is very busy with her church calling and helping others in the neighborhood, so she is able to help me mostly in the morning.  My mom recently had surgery right before I had Keaton, so she is also not able to lift anything over 10 lbs.  This makes things tricky as well as far as getting Sierra in and out of the car.  So far we've asked Brenda to help, and then my dad.  Now that I've shed some light into how we are handling three kids, I'll let you know how Keaton is doing.  He is a lot more awake during the day and likes to be held or lay on the floor looking around.  A dangerous place if Carter is around, so I have to keep a close eye on things.  He seems to eat really often and likes his binkie sometimes.  Once late afternoon approaches he seems to settle down some.  Sierra naps about 1-4 but Keaton seems to be awake during this time, so I always have someone to watch.  We try to feed him one last time about 8:30 or 9, then put him in pajamas and swaddle him.  Carter and Sierra are in bed between 7:30 and 8.  He will sleep anywhere from 3-6 hours, then wake up to eat.  This feeding takes about an hour because he's very hungry but also tired.  Once he's changed and burped (which takes times) he usually goes back to sleep again for another 2-3 hours.  Then we're pretty much up for the day because by then it's like 5:30.  Chris is up and gone to work and once Keaton is fed, Sierra and/or Carter are up for the day.  Even if Keaton goes back to sleep, the other kids are up and needing breakfast.  So I think we are averaging 5-6 hours of sleep.  Chris and I are taking turns feeding the baby right now until he goes back to school.  The night is the hardest part of having a baby by far.

Having three kids is hard and I don't know how long it will take to feel comfortable.  We have three in diapers (yikes!) and it's hard to go to the bathroom or eat when it's just me.  I'm almost always holding the baby which obviously makes it hard to do things- he will go in the swing for some time here and there- and Sierra loves to touch and kiss him a lot.  It's sweet, but sometimes wakes him up and agitates him.  I've heard from other people it takes a few months to adjust, so I'm trying to be patient.  It's hard for me because I'm very schedule-oriented, organized and like to know what to expect.  With a newborn it's pretty go with the flow for a while until you notice their habits and can develop a schedule.  Keaton has already smiled a lot in his sleep and even has laughed twice.  I know that sounds crazy since he isn't quite 3 weeks old, but it's true.  He seems to be a pretty good baby so far.  He is hard to burp sometimes and wiggles a lot in his sleep, even when swaddled, but hopefully that will get better with time.  We ran out of newborn diapers so he's in size 1 now.  They are a tad big but the newborn ones barely covered him anymore.  At his 2 week appointment he was 75% for height and weight and 80% for head.  He was back to birth weight with 1 more ounce, weighing at 9 lbs 8 oz.  
One more thing I wanted to touch on again, is post partum depression.  This time I've had it some, and for those that have never experienced it I wanted to share some of the feelings.  Having a baby causes your hormones to go all over the place, and even with a good baby it takes time to feel normal again.  Being sleep deprived obviously doesn't help, but goes with the territory.  It can cause feelings of loneliness even when others are around, feelings of sadness and darkness, feeling scared or nervous to be around the baby, not feeling confident in your abilities as a mother, wondering when things will get better, feeling bleh most of the time, having a hard time sleeping, over-thinking (my hugest problem), over-analyzing everything, being obsessed with the time, hating night time and when it gets dark, being hard on yourself, loss of appetite or having a hard time eating, heart racing or body tremors, crying often...etc.  I've had all or some of these with each kid I've had.  It's even possible to feel like running around, giving away the baby or even hurting yourself or the baby.  I have never wanted to hurt my children, but some people can really have a hard time.  I have had a hard time before so I am very empathetic to those that go through this.  What is helpful in these situations for those that want to help, is to be patient.  To listen, not to judge, and to help in anyway you can.  I am good at asking for help now and not expecting people to read my mind.  I am trying to be easy on myself, but I find myself overdoing things by cleaning too much or lifting things I shouldn't.  Being pregnant for so long made me impatient to get back and doing things again.

Having children is really hard but can also be fun.  For me, the fun stuff comes a little bit later when they can interact more and are sleeping better.  I wouldn't have had more children or made it this far without a wonderful, fantastic husband.  We got a few more pictures back from Keaton's photo shoot, and I will share my favorite one here.  A great book I like to review is Secrets of the Baby Whisperer.  It has good information on baby's signals and cues, and how to love the baby you were given and trying to figure them out.  If I don't blog for awhile you will know why!  Thanks for reading and feel free to share any thoughts.

Wednesday, July 23, 2014

New Baby!

Keaton Thomas Thorup was born on Tuesday, July 15th at 6:33 p.m.  He weighed 9 lbs 7 oz and 21 1/2 inches long.  I went in Monday night at 8 pm to be induced since the doctor thought it would take awhile.  Well, she was right!  After almost 22 hours of petocin and being in labor he finally came.  The nurses were betting each other that I would end up getting a C section.  Keaton was breached for awhile but turned on his own.  Although he was heads down, he stayed high up.  It took just a lot of time, positioning and petocin to finally get him to move down.  We didn't think he would come down on his own.  The doctor said it was because he was so big, and I'm just glad I didn't have to have a C section.  I only pushed for like 8 minutes and there he was!  We had some pictures done three days later and he cooperated for part of it.  This is just one of those cute shots.

It's been an adjustment having three kids, even with Chris home helping.  Keaton loves being held so not much is getting done but that's alright.  He is pretty easy to calm down and seems to be a good baby so far.  His cry is cute and not too loud or piercing.  Once you've already had kids the shock of how much work and lack of sleep can bowl you right over.  This time we were a little more prepared for it.  Change can be hard even if it's a good thing, so I expect a few months of adjustment before we feel like things are "normal" again.  I've had a few downs so far already because I had planned on nursing the baby.  With Carter I only did a little in the NICU and then pumped for several weeks.  With Sierra I bottle fed right from the beginning.  This was to be a new experience for me, but one I hoped would work.  Unfortunately, the breast feeding did not work out for us.  Keaton latched on great in the hospital but never seemed to get enough.  With being such a big baby, we had to supplement as well.  I hoped once my milk was in it would be enough, but I got so engorged that he never latched on again.  We tried frozen peas, cabbage leaves, warm showers, pumping and a nipple shield but nothing worked.  I know my limits, so we decided to just go with bottles like we did with the other kids.  I talked to several lactation specialists and they said I must just get a ton of milk and immediately get so swollen that nothing can come out.  It was frustrating and painful for a few days.

The other thing about having a baby is post partum depression.  I had it really bad with Carter and some with Sierra.  It's something I know I will probably struggle with, so I have to take it easy on myself and accept all the help I can get.  I love my children, but motherhood has been the biggest struggle in my life.  I hope with time that things will get better.  I'm open about discussing it, and if anyone wants to add their experiences feel free to.  In the meantime, we are a happy and busy family of five.  Sierra is sweet and gentle with Keaton and loves to touch and kiss him.  Carter so far seems a little more stressed out then normal, but otherwise doing fine.  We are lucky to have such a cute little boy added to our family.

Thursday, June 12, 2014

Tooth Fairy & More

Carter has lost his first tooth!  It's so funny because we just saw the dentist and he noticed 2 bottom teeth that were loose and suggested numbing and pulling them out the next week.  Later that day we were in the car, and I noticed blood in his mouth and something white rolling around.  I fished it out and it was his little tiny tooth!  He seems so young to have lost a tooth, being only 4 1/2.  We might try pulling the other one out this weekend.  He looks cute with that little gap now.

Carter also had an xray at Shriner's in orthopaedics since it had been 18 months- his spine had a curve of 11 and you have to get a 10 to have scoliosis.  She didn't seem concerned though, and said it could have been how he was sitting.  So we will follow up in a year and see how it looks then.  His hips look great though and she was pleased how he is sitting, scooting and standing now.

We weighed and measured Carter, he is 38 lbs and 44 1/2 inches long.  Measuring his length can be tricky but we did it several times.  His dietitian didn't believe me, because that puts him at 95% for length and like 45% for weight.  He is a tall boy!  So we are going to be increasing the calories in his Pediasure to help support his growth.

Carter's CNA Brenda started on Monday, and today is the 2nd day he's gone with her for the day to play.  She takes him from 10 am to 4 pm and she seems really nice and caring.  I think he enjoys a new change of scenery and routine.  He's had a sinus infection, plus with teething he's been a little more ornery.  I am 34 weeks 3 days and so ready for this baby to come!  I have 32 days until I am induced!  Crazy.

Wednesday, June 4, 2014

School is Out & 40 days!

School ended today for the summer, and it's honestly the day I have been dreading for months now.  Carter can be pretty fussy in the evenings if he gets bored, so I have been stressed about the long months of him being home all day in the summer.  Finding respite has been hard, but on Monday we have a CNA coming to the house to train to work with him.  We will see how that goes.  I am so much bigger with this pregnancy then last, I don't have the energy to lift Carter much or go outside for the kids to play.  Which is exactly what they want to do.  I could use the extra prayers that the kids will be content with what we can do this summer, and that they'll be content.

Coming up this summer:  Carter has most his annual doctor appointments this month so I can get it in before baby comes and school starts up again.  Carter has the dentist, an orthopedic appointment at Shriner's, Neurology and GI.  In the fall he has his eye doctor appointment.  Carter had an Eagle Eyes assessment, and we will look at that again in the fall.  I am hoping his teacher can implement it into his IEP so he can use it.

Looking back over Carter's last year of preschool, we have been blessed with Carter being pretty healthy.  He had a few sicknesses but nothing major.  He no longer needs his bi pap at night which is great, and he's been able to come off a few medicines.  We are still working on the sleeping all night thing, which I suspect will always be a challenge.  We also have family close by that really helps me out when I need it.  For the last month, I've had help getting Carter in and out of his wheelchair for school so I didn't have to lift him, and into bed at night.  It's been nice to have such support with Chris being gone more at school.  This is also a challenging time, having Chris gone more with a third kid coming soon.  Sometimes I wonder if it will be worth it, and I sincerely hope so.  Props to all the couples that got through school while married and having kids!  Seriously amazing.

So the countdown is on...40 days until I am induced with baby Keaton.  I am planning on being induced for the convenience, and because the baby has measured a little big.  I don't want him too big so if things go well and are progressing, we will be induced on July 14th- my due date is July 21st.  I've already packed the hospital bag most the way, made my lists for the last things, ordered some cute things off Etsy in preparation for his newborn photo shoot, buying diapers, etc.  It's fun to feel like things are finally getting close, and fun to pull out the little outfits and see Sierra aww over them.  I don't know when I'll be updating again, so wish us luck!

Tuesday, May 13, 2014

Sleep Study/EagleEyes/ Baby

We found out the results from Carter's sleep study, which went great despite him waking up several times crying!  He has no central apnea, didn't snore or obstruct, and his sats were fine the whole time.  I am so pleased!  We still want to keep his bi pap around for the times he gets sick, so we can avoid going into Primary Children's.  But this is another great step for Carter!  

EagleEyes is an innovative eye-controlled technology developed at Boston College, for children and adults with severe physical challenges.  These individuals are most often non-verbal and communication is minimal.  The mouse pointer uses the eyes to follow the location the user is looking at on the screen. Surface electrodes are placed by the eyes and on the head to determine where the eyes are looking.  This system allows non-verbal people to able to communicate for the first time, and act independently as they learn.  I'm not sure if Carter will be a good candidate or not, but we are having him assessed on Friday at Jordan Valley School to see how he does.  To learn more about it visit the website http://opportunityfoundationofamerica.org/eagleeyes/main/

I have bought a few things for baby but still have more on my list.  We are going to have photos of him taken after he's born.  We want to do one with him in just a tie, and then one in a bucket with a fishing pole.  There are also some cute outfits on Etsy I want to get, and nursing tops.  If anyone wants a hint for a gift:)  I'm 30 weeks 1 day, so 72 days to my due date unless I get induced a week early.

Wednesday, April 30, 2014

Updates & Props to Special Needs Moms

It's been awhile since I've blogged, and I have a few updates to share.  With this pregnancy, they found 2 calcium deposits at my 20 week ultrasound.  One in one of the heart chambers, another in the stomach.  They also couldn't see his mouth good.  They sent me to a specialist, because a white calcium deposit in the heart is the only visible marker for Downs Syndrome.  Since I never opt for blood work or additional testing, this hadn't been ruled out yet.  I was surprised to have anything come up, because we knew we weren't carriers of 1p36.  I guess it never crossed my mind this baby could have something else.  I saw the ultrasound specialist at IMC and they were not at all concerned about the deposit in the heart.  Whew.  His lips were also fine as well as everything else, but the calcium deposit in the liver, they aren't sure about.  They aren't worried, but they also don't know what it is.  At first they thought gall stones, but not sure.  I go back on Friday to see if it's grown or even gone away.  I hope it's gone, whatever it is.  I don't need anymore stresses with this pregnancy!

I'm now 28 weeks 2 days, in my final trimester.  While that is reassuring and exciting, it also seems so far away yet.  I have been having a really hard time breathing lately, feeling dizzy and light headed and not able to stand up for long.  I am able to do most my regular chores, but I'm so uncomfortable now that it's not fun.  When I bend over I get sharp pains in my lower abdomen, so I'm trying to take it easy.  Ha.  Besides being tired of course and having reflux/heartburn (lovely) I am having a lot of Braxton hicks.  Not painful, but the tightening of my stomach makes it harder to breathe.  Sierra jumps on me a lot so my stomach is almost always sore.  Oh, the joys of being pregnant with toddlers!  What I didn't really expect with this pregnancy, was how at 6 months I am having a really hard time carrying Carter.  I am pretty strong and I've been carrying him his whole life, but his 38+ lbs of weight almost throws me off balance.  I am going to try and get help from neighbors and family with lifting him into his wheelchair to and from school, and to bed at night.  Even giving him a bath is a big chore, because my huge belly doesn't allow me to bend over much or get too close to the tub.  I have about 3 more months of growth, and I don't know how I am going to do it.  With daddy gone more now too it's hard.  I am bigger with this pregnancy, already weighing what I did when I had Sierra.  I have gained about 13-14 lbs, so I am trying to watch my eating more.

I have been discouraged lately with finding respite for Carter.  We found a company that was happy to help us, but they don't have a lot of locations or employees.  They sent one out for us to interview, and she was just a little too young for me to comfortable with.  I have another company coming out this Friday to meet with us and see if anything will work.  I am hoping they have a trained employee that can take Carter out of the home for 4-6 hrs, 4 days a week during the summer.  That would give me enough of a break and help when the baby comes.  Cross your fingers they have someone for us!  It's frustrating to have the funds but most companies say he is too young or has too many needs.  Carter is having a sleep study on Friday to see if he still needs his bi pap, and we are weaning him off another medicine.  I'm all for making our lives less complicated if he doesn't need it anymore.  He's doing great in preschool and has one more month until summer.  Sierra just turned 2 last week and had a Minnie Mouse birthday party.  She is in the 70-75%  for height, weight and head.  

We had a fun Easter with three egg hunts.  We also have started buying things for baby #3, and we like the name Keaton Thomas or Braxton Thomas.  Life is hectic and busy as usual, but we are trying to take it one day at a time.

Just one other thing I've been thinking about lately.  I am always amazed at special needs moms and what they are capable of handling and doing.  I had an aunt once tell me how it was a bit easier having her special needs kid last, because her older kids could help or took care of themselves for the most part.  It got me thinking about the families that had their special needs kid first, and how scary that must have been.  Not only are you adjusting to being a new parent, but you have this kid you are trying to figure out what is wrong with them, and then coping with the different life you've been given.  The first part you just have them to take care of, but then you have the momentous decision of having more children.  With the second child you usually feel somewhat experienced, but when you have a special needs kid first, it's a whole new experience.  For me, it was like being a new mom for the first time again.  Because here I had this 'normal' kid doing all these things I wasn't used to.  And usually the oldest can get to the point where they can help with other kids, or at least dress/entertain themselves, etc.  But not when your oldest is a special needs kid.  Sierra calls Carter baby often, because to her he is younger.  He can't bathe or dress himself, he is still in diapers, he relies on us for food and medicine and transportation.  It definitely throws a kink into things, and then say you go for a third kid.  Now you have basically a baby and a toddler, while dealing with pregnancy.  I feel like I am going to have two babies and one toddler.  No idea how I will ever be able to get around by myself with three kids.  Sierra runs away in stores and won't stay in a cart, and Carter is only good for so long.  I don't know if this makes any sense, but I wanted to throw a big shout out to all those special needs families, especially those that had their little special child first.  Such a momentous, on going struggle to take care of everyone.

Thursday, March 6, 2014

Doctor/School/CHIRP/Respite/Walker

Carter saw Dr. Nancy Murphy last month for his annual and everything went great.  She reviewed all of his medicines, feeds, stats, health etc.  He has had 2 seizures in the past year, and 2 hospitalizations.  He has been very healthy (knock on wood) and doing great in school.  She was very pleased to see all this, and loved to watch him scoot.  She called it his bunny hop which is more accurate then a scrawl, lol.  We ended up weaning him off one med, so he's down from 6 to 4.  While we were there, Carter was rocking back and forth a lot and scrunching up the paper on the patient table.  She talked a little about autism, but said that autism can share similar actions as 1p36 deletion syndrome.  She wanted to talk more about it and possible medicines if we can wean him off his other things.  I'm not sure sure about that, because he is acting just fine to me.  I know he was not happy to leave school for this appointment, and was tired, so to me the rocking back and forth and crumpling paper wasn't peculiar.  He is a sensory seeking kid, but I don't need another diagnosis or med for him.  We talked about how we hardly use his bi pap anymore unless he's sick or breathing weird, so we are scheduled for a sleep study in May to determine if he needs it anymore.  His last hospitalization he went without it all night and never dipped in oxygen or had alarms go off.  Crossing my fingers if he doesn't need it, we can be rid of a big piece of equipment from his room and complication to our nightly routine.

We also had another parent/teacher meeting in February, which seems kind of silly with him being in preschool.  It's kind of cute though, so I go.  His teacher loves him and is very pleased with his progress.  He is working on attending to books more and not just turning pages (which he does well), he is working on hide and seek activities (he already has object permanence down), and putting things in and out of objects.  He likes to take out but is learning to put in as well as taking turns.  He is doing great in a walker at school and enjoys it.  She said he is the first to grab her hair in the morning or her badge, and loves music time and playing with different doughs.  He had a vision assessment done by his teacher and me but I'm not sure what that really shows yet.  We'll see the eye doctor again in the early fall to see if that can help with his IEP and keeping him where he's at.  She said overall he is very pleasant, affectionate and has great potential if given the chance.  You have to give him more time to respond to things, and when he wants to say yes he will raise or wave his arm.  If no he just won't respond.

We found a neat website called C.H.I.R.P. for Children's Health Information Red Pack.  You can fill out some forms about your child that will be stored in a tube in your fridge in case EMT's need it.  It's a way to have your child's diagnosis, medicines, past surgeries and doctors' contact info ready at a snap.  To alert the EMT's you have this information, they give you a magnet for your fridge and a sticker for the back of your front door.  It doesn't cover everything, but it's a great start if your kid has complicated health issues.  We've been to Primary Children's so many times that I always meant to have a binder all made up, but never did.  I thought it was a great idea so I filled it out and am just waiting for the tube, magnet and sticker to come.  It's easy to update and ensures current information in the case of an emergency.  The website is:  www.health.utah.gov/ems/emsc go to general public-CHIRP parent/guardian login and start a new form.

As far as the respite goes, I have spread the word to some family and neighbors and have received only 1 interested response.  Carter has spring break at the end of the month and then summer break in June, so if no one responds by then I will probably go with an outside agency and hope we find someone we can click with and be comfortable with.  I was slightly disappointed that family wasn't interested, but it's understandable for some that already have their own kids.  I was really hoping to use my sister in laws but they are not 16 yet so they can't be paid.  Getting bigger pregnant is making it harder to lift and carry him around, plus Sierra always wants me too.

Carter's Kid Walk finally came in and it looks great!  We've tried it once since it was adjusted at school and Sierra just kept wanting to push him which is not the idea.  So maybe we'll have better luck as time goes on.  I'd love to see him using it and even go on short walks with it.  It's lime green and the wheels flash colors once it gets going.
Baby Update:  I'm over 20 weeks so halfway there!


Tuesday, February 18, 2014

Oh Baby and More

We found out we are having a baby boy, due July 21st.  I am 18 weeks now, just about 4 months along.  I am still exhausted but otherwise doing fine.  The placenta in the picture is right above baby, so I haven't had luck feeling him move much.  That explains why but I wish I could feel him more.  I was surprised to be having another boy, but it will be fun to pull out Carter's old things and see what will work for a summer baby whereas Carter was a winter baby.  It will be fun to see how Sierra reacts to a baby brother.  I have a feeling she will be able to hold her own JUST fine:)  

Carter is doing great in preschool as usual, and doing a walker everyday in therapy.  I am so glad he is doing well and enjoying it.  It helps he does it while another girl is too.  He is tapering off a med and has no side effects, so that's good to get him off medicines that we can.  He has been a sweetheart and affectionate as usual.

We found out about a month ago that DSPD (Division of Services for People with Disabilities) approved us for a lump sum of respite funds to use within one year.  I had to attend a training today to figure out how that works.  He will remain on the waiting list which is good, and we can even hire whoever we want if they are 16 or older.  I got so much information and paperwork my head is still spinning.  We are getting a significant sum, so I am thinking about how to get this ball rolling.  With Carter in school I would only need it on days off or the summer, especially with the baby coming.  I will welcome volunteers or family that are interested, and if that doesn't work then I'll find agencies that already have trained employees.  We've had an aide come before to help with Carter, but she only came an hour a day and I was never quite comfortable enough with her.  That is why I think family would be great, because they already know him and will get paid to care for him.  I am grateful for the funds and hope we can put them to good use.  I know others that could use it as well, but I can't choose who gets them.

Wednesday, January 15, 2014

Progressing

Carter has done a few awesome things lately that I wanted to share.  He is getting up a lot of the time on his knees to say hi and ask you to pick him up.  He likes to knock things off the coffee table, and recently he walked a few steps on his knees to get to what we wanted.  I was excited!  His therapist said this was one of their goals for him so that's great.  Also, his preschool teacher sent me a short clip of Carter in his walker.  I laughed after I saw it, because Carter once again has found his own way of moving even if it isn't correct.  I hope I can post the video to share it here.  Also, we were in the car and he was getting fussy because it had stopped, so we started singing "If You're Happy and You Know It" and on the 3rd verse we say shout hurray! while putting our arms in the air and shouting hurray.  He anticipates this verse and raises his arms as well a few times.

video