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Archive for the ‘OT / PT Development’ Category

Wow – I remembered my password and everything.  Hi.  I’m not even sure if people still read this or subscribe to it.  But, on this blizzard-y day I felt drawn to come back and jot down some things as I reflect on experiences of this time three years ago.

Three years.  It seems so far.  Yet, it also feels like yesterday we were keeping vigil at the NICU praying, wishing, hoping, that there would be a positive outcome from all of this.  For 100 and 142 days.

The third birthday was hard for me – harder than their second and I haven’t entirely figured out why.  Maybe, because of all the assessments they were put through while ending Early Intervention services and looking to see what further would be needed, I had to relive the gory details of my pregnancy, their birth, and their entire medical history?  Is it possibly because THREE is just so different than two?  That they’re little humans now with opinions (lots of them), words, feelings, and personalities?

Or, it seems, that each year has been a specific theme or category.  Year one was definitely “survival“.  It went by in such a blur, you could barely take a second to breathe, and at the end of it we felt like we had run a marathon.  It is awful to admit but the first year of memories is not very clear.  I think we lived on adrenaline and coffee.  I actually don’t know how we all came out of it alive.  But we did and I think we did a decent job of it.

Year two was “stability“.  We survived the first year, routines were getting set in place, it was getting easier in some ways but challenging in others.  But, for the most part, we finally felt like we knew what we were doing.  Other life challenges came up but the kids continued to steer the course and check the boxes of major milestones like crawling, walking, and first sounds.

Year three I’d classify as “change“.  Developmentally, the difference between them at their second birthday and them at their third birthday is mindblowing.  When they were diagnosed around two with speech delays, I was crushed.  Even though I knew there was a delay going on – I didn’t realize just how frustrating it was for the kids.  Their minds had so much they wanted to communicate and they couldn’t.  We got them into speech therapy and worked with them at home with signs, pictures, and the like.  Progress was made and both were discharged with 6-8 months of starting – and now, they’re consistently using phrases and their most recent assessments have them well within the average range (and a little above) for their age.  Colton literally went from having ZERO words on his second birthday to testing within average and above average for receptive and expressive language.  Amazing.  A good friend had told me when we got the speech delay diagnoses that I would be shocked at the difference between two and year when it comes to communication.  At that time I couldn’t see the forest through the trees, but she was SO right.  Once it clicked, it snowballed and their language exploded.  Miss Keltie also tested out of Early Intervention services in June – so she, essentially, was caught up to her peers by 2 1/2.  Colton remained in mostly for his low core tone and to continue to reinforce other gross motor and fine motor skills.  Their personalities evolved, too – Colton continue to grow his affinity for trains, trucks, and anything that moves.  Keltie is really into music and art.  Keltie had an accessory added, and then taken away.  She was diagnosed with strabismus in both eyes (eye turning in) just after her second birthday.  We tried glasses for a few months but it didn’t help and she ended up having double strabismus surgery at Boston Children’s Hospital.  The surgery was an absolute success (and I was an absolute wreck about it) and as of now she doesn’t need glasses and her vision is good.  Other changes happened as well – I got a new job.  One that has me going to an office – so after 7 years of working from home and 9 years with the same company, I made the decision to try something different.  It was time and I needed a change of pace.  I was traveling a lot and the kids were reacting poorly to me being away.  So, in November I took a new role and we have been settling into a new routine of me working in an office outside of the home.  It was very bittersweet, though.  So many of my colleagues there supported us through this journey and never questioned my commitment to my work when dealing with the kids in the hospital and post NICU.  I will forever be grateful for the love and support I received and that is why I miss the people I worked with terribly.  However, the work/life balance with my new job is much better for me and I am truly happy with my decision to leave and I think the kids enjoy having more of me and my attention, too.

Speaking of the year of change, since Early Intervention services stop at 3, both kids were assessed for the developmental preschool in town.  It was three weeks of assessments (once a week).  Keltie was assessed for speech only and Colton was assessed for speech, Occupational Therapy (OT) and Physical Therapy (PT).  At the conclusion of the assessments, we met with the school and the therapists and got the news that both kids were accepted into the program!  Keltie was accepted as an “at risk” model peer.  Basically, she is caught up to her actual age and peers in all assessment areas.  But, due to her severe prematurity, she is at risk of falling behind.  This way, teachers and staff will keep a close watch on her and we can run any interventions that may be necessary before it would get to a point where an untrained eye would notice (i.e., us).  We think this will be amazing for her – especially when it comes to routine, playing with other kids, and transitions.  Keltie struggles a lot with transitions.  She was a model peer in the developmental playgroup through Early Intervention and often had to be pulled out.  Not much of a role model, Keltie…  I’m really hopeful for this program for her and think it can only do even more to support her continued development and growth.

Colton was also accepted.  He will receive therapies for all three areas – even though speech tested on par and above average, there are concerns about his volume and endurance.  They feel a lot is related to his low core tone, so they’ll work in sync with PT on how to boost his speech.  OT will continue to focus on maturing some of the emerging skills he has and PT is going to be the hardest work in also maturing some emerging skills and working to strengthen his core and increase his use of both sides of his body.  We are super excited – although it is difficult to hear that one of your children still isn’t completely caught up after three years.  But, we remind ourselves that it could have been worse.  So much worse.  If all they need are these boosts here and there – throw as much services at them as we can.

So next week, my once micropreemies who weighed less than 2lbs a piece will be saying goodbye to us.  They’ll be dropped off at preschool with their backpacks (personalized from LL Bean, of course) and a world of opportunity in front of them.  For 2.5 hours two days a week, they’ll be in the hands of others and not in our home – a new adventure to them and an anxiety ridden experience for us parents.  I am excited, though, to see what this experience will do for them and all they will learn.  I am so grateful for access to these services and know we are lucky to have this opportunity for Colton and Keltie.  I am the most grateful for two smart, beautiful, thriving “threenagers” – even with all of the sass, frustration, and toddler drama that comes along with it.  I think year four will have a lot to offer them – and our whole family. I’m excited!

2015 Twin Pics

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Gosh – it’s been busy but, like a broken record, you’ve heard that here before.  So, let’s get into the details!

Colton and Keltie turned one on January 24th.  What a day it was – I spent it working and Chris spent it carting the celebrities around to visit various family members.  They had cake.  Three times.  And I cried myself to sleep.  An odd sensation of “we did it” came over me and it was a nice release. 

They had great 12 month check ups at the pediatrician about a week later.  I didn’t get the actual age percentages but I know both are on the actual charts for everything except length!
Keltie: 17lbs, 10oz (43% adj), 27″ long (30% adj), and 17.25″ head (50% adj).  She’s pretty proportionate.
Colton: 20lbs, 4oz (65% adj), 27″ long (9% adj), and 18″ head (75% adj).  He’s basically a big bowling ball.

The pedi is very happy with where they are at! And clearly so are we considering when they were born, their stats were –
Keltie: 1lb, 9oz and 13″ long
Colton: 1lb, 13oz and 13″ long

We did have a bit of a scare – both of them came down with pneumonia.  Luckily we were able to treat from home and didn’t have a hospitalization.  It was scary, especially with the coughing and wheezing, but they were strong and some antibiotics and nebulizer treatments helped immensely.  If we get out of this winter only having pneumonia I will say it has been an extremely successful seclusion!  As much as we are going a bit batshit crazy from not being able to take them anywhere and spending 99% of our time at home, keeping them healthy is much more of a priority and it is clearly working. 

Developmentally, they’re doing amazing.  SIMPLY AMAZING for being born so early and going through so much.  We have PT coming once a week for them both, in addition to our developmental specialist (OT).  PT has been an incredible boost for their gross motor skills!  Keltie is now crawling on her hands and knees, pulling to a stand, and is starting to cruise some furniture.  I think she’ll be walking shortly (watch out world)!  She has ZERO fear – so a lot of what we’re working on with her is safety.  Colton is army / belly crawling.  He is bearing weight through his legs but doesn’t pull to a stand yet.  Just this weekend he has been seen rocking on his hands and knees so I think he’s working on some advancement to kneeling / crawling on hands and knees.  Both are clapping – especially when you sing “Patty Cake”.  Grammie and Grandy worked on that with them!  Lots of babbling but no words yet.  We transitioned them to milk – so no more formula!  And they’re eating three meals a day and loving all the different foods they’re trying.  Colton’s favorite is still yogurt and he likes pot roast.  Keltie’s favorite are carbs and crunchy things.  Both love pasta – they are Italian.  🙂 

Oh and *drumroll please*:  for the first time ever, in their entire 13+months of living, they are not on ANY medication!!!!!!!!!!!!!!!!!!!!!

Keltie had an appointment with her nephrologist two weeks ago and her nephrocalcinosis has resolved and now we have only annual visits with her!  No more Diuril!  And we started weaning Colton’s First Omeprazole (Prilosec) once he was transitioned to milk and he’s doing awesome with barely any reflux at all!  I NEVER thought the day would come and it seriously makes me so proud.  I was in Florida on business when Chris brought Keltie to her appointment – he text me about her nephrocalcinosis and I had to fight back tears.  Such strong, strong little people!

And – we have teeth!  Well, Colton has teeth and I think tonight I might have felt one for Keltie.  Colton literally got 4, yes FOUR, teeth in about 48 hours.  Not exaggerating.  I put him to bed one night and he woke up with two more teeth.  It’s insane!  And they’ve been tolerating it really, really well – not much of a demeanor change and just some Tylenol or Motrin here and there and that’s it.  Thankfully. 

I think that’s about it – they make me smile (and cringe haha) every day!  Their personalities are hilarious and now that they’re on the move it’s a whole new challenge.  We are getting excited for Easter – last year, it was the one “family” holiday they spent in the hospital and that was a hard day for both Chris and I (he worked and had a tough time leaving the hospital to go to work).  I got out their Easter baskets and they could have slept in them this time last year.  Easter has always been a tough holiday as I lost my Grampy on Easter many years ago – so the NICU memories of it don’t help.  But what we are trying to focus on is how far we’ve come from last year and how exciting it will be to celebrate the Easter Bunny with them and dress them in their Easter Sunday best (bonnet optional haha)!

I’ll leave you with some pictures –

One Year Old!

One Year Old!

One Year Old!

One Year Old!

Handsome guy!

Handsome guy!

Pretty lady!

Pretty lady!

Sassy and Coy

Sassy and Coy

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The holiday season came and left very quickly – almost as fast as the 5 hour shopping spree I went on to get all the shopping done I could prior to the holiday.  We took Colton and Keltie to pick out their first tree – not sure how much they liked it but it was a warmer “winter” day, so we took advantage.  Tall and skinny – the way we like our trees!  Because it’s such a small world, we ran into one of their NICU roommates while at the tree place!  He was a cutie and, from what I’ve learned, parents of cute babies tend to introduce themselves and inquire about such babies.  So that is when we got into the typical conversation of how old they are “well, they’re technically almost 11 months but they were micropreemies so they’re really 7 1/2 months” and about how they were in the NICU.  Well, this little guy was in the SSH NICU as well because of blood sugar issues.  Ahh, I thought to myself, this is one of the “fatty patatties” that we had as rotating roommates in the Party Pod.  When we said their names, they immediately perked up – they were 3 day residents in the Party Pod as well!!  It was funny, we all got a good chuckle out of it and it was probably more memorable than the actual tree picking out for the twins. 

Christmas Eve we spent at my mom and stepdad’s house for their annual gathering.  It was fun to have the twins dressed up and playing with their oodles of new toys.  It also happened to be their 11 Month birthday!  Keltie had a blast with my uncle’s glasses.

Family

 

 

 

 

 

 

Christmas Eve

 

 

 

 

 

 

 

 

 

 

 

 

Christmas we spent at my sister-in-law’s with the Allan family and Grandy.  It was a wonderful day and once again the kids got spoiled with lots of new toys.  It’s been almost a month and we still don’t know where we are going to put everything!

Since then, we have worked harder on their playroom.  I say “we” but really it was Chris and his Mom and Dad while I was away in Chicago on business.  We went through and pulled out all of their “baby” toys to make room for their new stuff, hung the TV on the wall, got a bookcase to hold all their books and toys, and took out the Pack N Play.  I can’t believe that they’re too “old” for their play mats and things we have used daily over the last 6 months!  It is nice, though, to have a space dedicated to them and all of their things.  They really enjoy having the freedom to roll around and play with new toys that capture their attention.

From the developmental side, they both have had a boom but especially Keltie.  Three weeks prior to Christmas, we had PT come in to work with her on her arm strength.  About the day before Christmas, she started army crawling and sitting unassisted!  Just like she was in the NICU, as soon as we start rallying the troops she goes “oh you just need me to do X,Y and Z, I can totally do that” – typical Keltie.  So, as of their 11 month birthday, I had two unassisted sitters (still without protective reflexes so they do topple over sometimes) and one crawler.  They both started using consonant sounds as well – lots of dadadadadadada and mamamamamama and babababababa.  It’s pretty awesome!  We are still working on Colton crawling – his strength is there but he’s a lazy white boy who much prefers to roll everywhere he goes.

I've been everywhere, man...

I’ve been everywhere, man…

 

              

Who are these big kids?!

Who are these big kids?!

 

 

 

 

 

 

 

 

 

 

Health-wise, they’ve been good.  Well, up until they got pneumonia this week.  And passed it along to Mommy and Daddy.  Thanks, guys.  As of January 11th, Colton weighed 19lbs, 11oz and Keltie weighed 17lbs, 3oz.  They have their 12 month check up February 1st, so we’ll get all of the stats and percentiles then.  I can’t believe they’re almost a year old…it’s been the fastest and slowest year of my life. 

This past Sunday we had a very small birthday party for them with immediate family only because of germs and RSV.  And, even with all the precautions we take, they have still managed to come down with pneumonia.  So, if that’s any indication as to why I’m crazy about bringing them places, maybe you can understand it a bit more.  That celebration deserves its own post – so watch for that to come up next.  And – we’re coming into the one year anniversary of my pPROM and the delivery, so I am likely to use this blog to get some of those emotions out.  Stay tuned.

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Sooo…it’s obvious that time is something I lack these days.  Such is life I guess – between the peanuts, their chaotic schedules, work, home, holidays, etc…it’s been quite busy.  I keep saying that I need one of those little yellow minions to help me out but I’ve yet to figure out how to get one.  But, here I am and we should get caught up on the wee ones!

On October 24th, they turned 9 months old!!!  Amazing – simply amazing.  Here were their  9 month (5.5 adj) pedi appointment stats:
Colton
– 17lbs, 2oz (10th percentile for actual LOL FATTY)
– 25.75″ long (25th percentile for adjusted)
-17.5″ head (25th percentile for actual – huge dome)
Keltie
– 14lbs, 4oz (2nd percentile for actual YAY!)
– 24.75″ long (20th percentile for adjusted)
– 16.75″ head (11th percentile for actual)

They have made it onto the chart for all but their length – I am so shocked considering how tiny they were!  As of last week (they went for their first Synagis shot to help fight against RSV), Colton was 18lbs, 1oz and Keltie was 15lbs, 6oz so they are doing a fantastic job growing!

We were blessed to have my friend Candace from Candace Schwab Photography in town the day before their 9 month birthday and she was kind enough to come down and do a family photoshoot for us.  Her pictures came out absolutely incredible – as always!

 They experienced their first earthquake and hurricane as well – and survived both.  Lucky for us they were minor events but it was my first earthquake and I am over 31 years older then they are! 

Colton and Keltie both sat unassisted in the month of October.  Colton is perfecting his sitting while Keltie has a little more work to do.  They continue to roll all over the place, laugh while being tickled (and sang to), and love eating all kinds of new food.  We got the green light to start adding proteins so they have had chicken, turkey, yogurt, quinoa, and other yummy things. 

We attended their NICU Follow-up Clinic at Boston Children’s Hospital at the end of October and had assessments done.  The clinic included meeting with two neonatologists and a psychologist.  It was a bit uncomfortable (we were in a room with one of those mirrors where people could watch from another room), but we tried to go with the flow.  Colton came out in all areas between his adjusted and actual age so he is doing really well with his milestones.  Keltie met her adjusted age for almost everything but was slightly delayed in a few areas so we scheduled a physical therapy consult to see if there is anything more we can do to help get her caught up.  They also suggested a second hearing screen (ABR) for both of them and that is scheduled for December.  Nothing major to be concerned about, but making sure everything is still good.  Much of the testing was done with toys so I wasn’t surprised that Colton did so well – he’s the toy guy.  Keltie much prefers to be social with people so I think that may have played into the results slightly but we will get her there.  I know she will walk and talk eventually! 

We also got to experience their first Halloween!  A good friend of our family agreed to sew handmade costumes for them and they were Pebbles and Bam Bam!  The costumes came out incredible – Lois did an amazing job!  We took them trick or treating to a few neighbors houses and it was fun – Keltie enjoyed the crinkle of the M&M package she got, while Colton was more interested in chewing on his basket.  No surprises there!

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…I was born on January 24, 2012.

I can:

  • grasp your little finger
  • suck on my fingers
  • bring my hands to my face
  • “brace” my feet

I like:

  • listening to your soft voice
  • feeling secure in my bendy bumper
  • having my hands near my mouth
  • to have my eyes shaded in bright light

I need a break when:

  • I get very red or very pale
  • I straighten my arms or legs tensely
  • my arms or legs are jittery
  • I sneeze, hiccup, or yawn repeatedly

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…I came into the NICU today and there was a sticky note from the OT/PT Developmental Team that had some literature on development and these cute little signs that talk about each of the twins and theirs likes and dislikes.  The OT/PT team has been working with them for the last week or so and they provide this information to help us as parents and our visitors learn how to interact with them.  I photocopied the sheets so I could bring them home and I wanted to share them here as well.

Hello My Name is Colton and I was born on January 24, 2012.

I can:

  • grasp your little finger
  • suck on my pacifier
  • open my eyes in dim light
  • kick my legs

I like:

  • soft voices
  • firm, containing touch
  • to be swaddled
  • dim light

I need a break when:

  • I grimace or cry
  • I close my eyes or look away
  • I splay my fingers
  • I sneeze, hiccup, or yawn repeatedly

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