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.

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!

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.

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.

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!

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.

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.