Therapy/ Photoshoot/ Zoo

Carter's new vision and physical therapist came and I felt like I already learned a lot from them.  Unfortunately, they will only be with him a few months until he starts preschool.  We kind of moved at a bad time it seems, because his yearly IFSP is coming up plus they have to do transition paperwork just when they are getting to know him.  He did pass the hearing and vision screening with the school district, we are just waiting on the rest of his testing now.  His vision specialist said she thinks he can see pretty good, but still has some delays especially with looking up.  She did think a lot of it had to do with his delayed motor skills.  She is trying to get us to teach him the sign more with things he likes doing to see if he'll communicate to us that he wants more.  We put him in a big blanket and swung him back and forth and kept asking him if he wanted more and tried putting his hands together.  He would either kick his legs or laugh, and at one point he laid down and laughed as if saying 'yes, swing more please!'  I will have to pay attention to his signals because it looks like he is already substituting signs for his own.  His physical therapist wants us to put him up on all fours whenever he is on his tummy so he learns to not just roll out of his stomach position but that he can get up too.  Currently he gets on his knees, almost all fours, and rocks back and forth a lot.  It looks like he'll be crawling here soon.

We went to Gardner Village a week or so ago and took some cute pictures of the kids.  Here are a few I liked.

We also went to the zoo and Carter just loves being in his wheelchair.  He rocks back and forth as if to push it to go faster.  We took the train and got some cute pictures. 
On another note, Carter has been waking up at 5 a.m. and it's been really hard.  He still goes to bed at 8 p.m. but like a little clock he is up by 5 or 6 at the latest.  I am so not a morning person so it's really hard to be positive in the morning.  I sure hope he starts going back to sleep for longer.

More Good News

I am so thrilled with Carter!  All of his doctor appointments lately are like a breeze and they are all SO happy with his progress.  His neurologist didn't even spend ten minutes with us because she had nothing to do.  His rehab/pediatric doctor today was beyond happy to see him laughing and smiling.  She looked him all over, reviewed his meds and current status.  Dr. Murphy reported that there was nothing she would change and that she was so pleased.  She congratulated me on my hard work and taking care of him.  It was so nice to hear from a renowned doctor that she wouldn't change anything and was so pleased with him.  It made my day!  I feel I am reaping so many rewards for our hard work last year, and that Carter is being blessed with a body that can move more.  Although he still can't communicate beyond grunting or shrieking or body language, I feel that I know for the most part what he wants or needs. 

She also predicted a long life for Carter because he is so healthy and has no respiratory issues, good lungs and a good heart.  He has no scoliosis or anything wrong with his bones.  She is excited for him to go to preschool in December and get out and be around other kids like him.  There are days I get down thinking of just the negative in life, but right now my heart is bursting and full.  God has truly blessed our family and I am so thankful.  Carter passed his vision and hearing screening with the Jordan School District.  They all thought he was so cute.  He is still scooting, getting up and down, rolling all over, stretching and now turning in every direction.  Good work buddy!!  We love you!  P.S.  Just please don't get over your side rail in bed anymore. 

Sicknesses/Moving/ Sister

Carter has been sick twice since entering Nursery.  Coincidence?  Had got a cold that lasted about a week and thank goodness for his suction pump that helps a lot.  He still can't cough well enough to get the secretions out so it just sits in his chest or nose.  Sierra seems able to handle whatever has come his way so far, she just gets little sniffles.  Now Carter has hand, mouth and feet virus; a common viral illness.  He has red bumps on his ankles, wrists, chin, around his mouth, back of his neck, legs and bum.  They don't itch but they look irritating to me.  His throat is bright red with some sores.  Thankfully the poor guy seems okay so far (crossing fingers).  I am giving him ibuprofen for discomfort and fever.  I just have to wash my hands often to keep from getting it or spreading it to Sierra.  His hands are always in his mouth as well as hers, so I can see why they picked something up quite easily.

Carter also has a small fungal infection around his G Tube site.  It had an odd smell for awhile and then started looking red so we saw the GI doctor last week and he put him on an antibiotic to get rid of it.  Carter was being super fussy for awhile so I guess all of this makes sense.  We are doing a sleep study next week to see how the tonsillectomy and removal of his adenoids went back in December.  Hopefully over the past 8 months there has been progress and maybe he no longer needs oxygen at night.  We'll see.  We also moved into the top part of a home we are renting and it's been really nice having more space.  The kids each have their own room, and the stairs are few and much easier to get Carter in and out.  It's been nice to be in a neighborhood with family close by and a great ward.  There are several special needs kids in the ward so I feel right at home.  So far everyone is very warm and welcoming.

  I know this blog is about Carter, but I also wanted to share some information on his little sister Sierra.  She is after all, a big part of his life now.  Sierra is a little over 3 months old and so cute.  Everyone is always saying how beautiful she is and it's true!  She loves to stare at her big brother and smiles often at him, and he reciprocates.  Melts a mother's heart.  She is already rolling to her sides and has rolled off of her stomach.  She lifts up about 90 degrees on her stomach, stands and bears weight on her feet.  While I hold her hands and lift her she keeps her head up super well and then stands up.  She is grabbing and holding toys and touching things.  She sits up supported quite well and has great tracking and eye movement.  It has been amazing to see all these things in such a little one.  She babbles all the time too and makes all these cute noises.  She smiles constantly and has laughed out loud a few times.  It takes some work to get a full out giggle.  According to What To Expect The First Year, she is right on developmentally if not a little ahead.

Having a baby girl and one that is so healthy and smart has been such a blessing for me.  Carter has been a struggle in different ways for so long that I feel like this is my reward.  She has really brought such warmth to our home already and made me so happy.  I feel like I finally know what it's like to be a mother that LOVES being a mother.  Everyday is such a joy and not just hard.  I feel that having her gives me enough of a diversion that I'm not constantly consumed with Carter.  It gives me more balance so that I feel more optimistic.  I admit I still get frustrated with Carter when I don't know what we wants, but I remind myself that I need to be careful how I act towards him.  Sierra will be a mother herself one day and will take her cues from me.  I want her to love, respect and stand up for her big brother.  So as his mother I should too.  It's normal to be with the baby more since she needs more, but while she takes her big nap it's nice to have one on one time with Carter too.  And I find that all the games or noises I do with Sierra makes Carter laugh too, even if he is across the room.  Here are some pictures of our lovely baby girl.

Nursery and School

I love this picture of Carter in his wheelchair he looks so happy.  Plus I love his little teeth:)  Carter went to Nursery for the FIRST time yesterday at our new ward.  He fell asleep in his wheelchair so we just wheeled him in.  They never came to get me so I guess he did good.  I was excited for him to go because well....he is 2 1/2 years old.  And the nursery didn't look very crowded, plus there are other special needs kids there as well.  Carter loves watching other children so I bet he had fun.  Plus children always take an interest in him because of his wheelchair or just him.  I can't count how many times I've heard a little kid, smaller than Carter, point to Carter in his stroller at the store and say "baby!"  LOL.  Nope, not a baby. 

Carter and I start meeting with Jordan School District next month to get school started for him.  He will start going to preschool when he is 3.  It's usually a few hours a day a couple days a week.  They will pick him up in the bus in his wheelchair which straps right in.  Seems crazy that it's so soon.  December he'll be 3 and going to school AND Primary.  Wow.  He sure is growing up fast.  He has been such a mover lately it's crazy.  He is scooting all over the place I just seem to miss the part of him actually moving.  He is getting into stuff now so I guess baby proofing is coming up.  He is constantly getting in new positions, some of which leave him frustrated and in need of assistance.  Carter can get up from his back, he has even somehow moved his side rail in his bed and fallen out.  Yikes!  He sure is strong and determined when he wants to be.  He is 30 lbs and 36 inches or so long.  He is still G Tube fed with PediaSure and is doing great with that.  People seem curious if he'll ever eat again.  I'm not too interested in pressing that issue right now with a new baby.  Perhaps in a few months we'll do another swallow study and see where he is at.

Since we moved, Carter is in a big boy bed now.  We are also re-starting vision services, physical therapy and aide services.  I am also going to have him do another sleep study to see if he needs oxygen at night anymore since his tonsillectomy.  I put everything on hold for a few months with new sister, but we are picking things up again.  These past 6-7 months have been so nice without seizures and doctor appointments.  I actually felt normal for the first time in awhile.  I am so thankful everyday he is healthy and seizure-free.  His neurologist was so pleased with his progress that our appointment only lasted 5 min.  I was so excited.  He still has his temper tantrum moments when frustrated and still wakes me up early, but otherwise a great kid to be around.  His smile and laughter is infectious. 

Sierra's Blessing & Poem

Carter's little sister Sierra was blessed this last Sunday and we got some very cute pictures of our little family.  Carter has been so cute with her, he tries to touch her and they stare and smile at each other.  So tender.  He is putting his hands and things in his mouth again, the therapist says that's great.  He is still doing well and getting so big.

Top 20 Reasons Moms of Kids With Special Needs ROCK
 Anonymous

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

No More Seizures! Knock on Wood

I haven't been grateful enough or vocal enough about Carter's absence of seizures.  He has had no seizures for at least four months.  We are so happy!  I think I was quiet about it for awhile because he had a hard recovery after his tonsillectomy, then I didn't want to jinx it.  It's like we went through a few months of heck to get to this point, and it's wonderful.  Carter is sitting up great and when he feels wobbly he puts his hands out for support.  He has been able to get up from a lying done position straight up like a sit up.  He now uses things around him to help him get up or change position.  This shows he is more aware of his surroundings and his own body.  He also rocks back and forth a lot and occasionally seems to move several inches.  He must be scooting some when we aren't paying attention.  So exciting!

I chalk his absence of seizures up to a combination of the few months we did the ketogenic diet, to medicine and him just growing out of them.  It's wonderful and I am so so grateful.  He has been so aware, he looks and follows people with his eyes much better, he holds a toy more steady and shakes it around, he is constantly trying to move too.  I just love how awake he is, it's like he woke up from a dream.  He laughs again so much and smiles a lot.  I am so grateful for this sweet boy that has come back to me.  We used to call him Mr Giggles because he laughed so much, then when the seizures started up he stopped.  With his new awareness has come some of its own challenges, like his frustration at not being able to do exactly what he wants to.  But he is one of the most patient little boys I know, he is so sweet.  He loves going on walks, car rides, to the store, errands, being around people and watching them.  He loves attention and peek a boo games.  His grandma and uncles are trying to teach him to scoot so he can move independently.  We just love this little boy!

Wheelchair

Carter's cute wheelchair finally came in- my Dad wants to call it Optimus Prime or something like that.  I picked the blue color for it, and the wheelchair techs picked all the details based on his measurements and needs.  There is a clear tray that goes in front of him as well as chest straps that criss cross to buckle him in better.  We haven't taken it anywhere yet, it isn't the easiest thing to transport.  It does fold up but certain parts have to be removed first.  I think we'll use the wheelchair mostly for church, some family events and walks.  Quick store trips we'll still use his stroller for.

Doesn't he look cute in it?