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Archive for the ‘Early Intervention’ 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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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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Look at us getting so big!!

On September 24th it was Colton and Keltie’s 8 month birthday!!! 

As of last week, Keltie weighed 13lbs, 9oz and Colton weighed 16lbs, 2oz!  They are growing so well and each day it seems they do something new to make us laugh.  In fact, Keltie’s newest trick is blowing raspberries:    Excuse it being upside down but I was trying to film it while she was on my lap.  And when she’s shaking, it’s me laughing at her.  She also does this now while eating which is really fun…   Both are still rolling champions!  You can’t put them down on their activity mat and walk away for a second.  Keltie likes inch worming to get to where she needs to be.  Today, Colton sat unassisted (froggy style) during his Early Intervention session!!!  We have been working with them both on their arm strength and sitting and I was so happy to see him do it! 

Overall, I can say I never thought we’d be at such a good place with these two miracles after only 8 months.  We are so proud of their strength and development and enjoy witnessing these milestones so very much!

(PS -I don’t know what is up with the formatting of the blog lately…it seems to have a mind of it’s own!)

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7 months ago as of August 24th, the twins came rushing into the world and we were faced with a lot of fear and unknown.  Today, the future is becoming less scary and the memories of their first few months are ever so slowly fading into our memories.  We have made some strides in their health – resolving some of their preemie issues and feeling a little more “normal” each day. 

Keltie

Miss Keltie had a routine renal appointment and they cut her blood pressure medicine by one dose to eventually discontinue it.  The dose she is currently at of Captapril is 0.12mL and isn’t even therapeutic anymore based on her weight, but they didn’t want to stop it cold turkey.  They will do a urinalysis (once we have a successful attempt to actually get some – Urine catch bag:  0, Diaper:  4) and an u/s is scheduled for next week to take a look at her kidneys.  We are hoping and praying that everything looks good and the nephrocalcinosis is stable or maybe even better / gone!  As of last week, she weighed 11lbs, 10oz so she is likely close to the 12lb mark by now!

Developmentally, she is perfecting her roll from back to belly and belly to back.  She does it well enough to sleep on her belly when she chooses (much to my dismay and my 2890123810 attempts to roll her back over).  She loves laughing, smiling, and has recently discovered her voice.  Chris and I joke that we now live with a teradactyl!  She is working on learning to sit unassisted and had her first spoon feed last week! 

Keltie in her fancy BabyLegs!

Colton

Colton has had a whole bunch of appointments and all of them turning out very well!  He met with his surgeon and he confirmed that his hernias were not present and he doesn’t need surgery!  That same week, we met with his GI doctor and he isn’t concerned about his delayed gastric emptying and is okay that he spits up 24/7  (it’s a laundry problem!).  The only additional testing he would consider at this time is an upper GI but because he’s gaining weight and doing well, he doesn’t think it is necessary.  His reflux does seem better – he doesn’t get the “attacks” like he used to and it truly doesn’t seem to phase him when he does reflux.  We go back to him in about six weeks and will likely continue to see him routinely until Colton works through the reflux.  Finally, Colton went for his third modified barium swallow study last week and the best news of all is:  he no longer aspirates on thin liquids!!!  We are slowly weaning his thickener (to make sure the thinner feeds don’t increase his reflux) and they even had me test him eating by spoon and he did great.  So we were able to introduce spoon feeds to him and he is LOVING IT.  I am so happy to know that he matured his swallow and can safely have thin liquids and start these spoon feeds!  As of last week, he was 13lbs, 13oz so I’m sure he’s well over 14lbs now!

Developmentally, Colton is still working on rolling over completely from back to belly.  He does well belly to back and we know he’ll figure it out soon.  He is doing excellent pushing up on his forearms and playing on his belly.  He is also learning to sit unassisted and found his feet and loves playing with them.  Colton has become a much more smiley guy and has the most adorable giggle.  He LOVES playing with toys and really enjoys chewing on his Sophie giraffe.

Mmmm Sophie is yummy!

   

Overall, we are so pleased with their progress and love checking off these boxes with each doctors appointment.  They are doing well meeting their adjusted age milestones and their laughs, smiles, and interactions warm our hearts each day!  Coming up next –  Spoon feedings, food, and baby led weaning (BLW)!

Happy 7 Months, Peanuts!

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Master Colton, or Coltonpants as we call you around here (no, I don’t know where it came from, especially considering the majority of the time you’re not wearing much more than your diaper)…  You’ve been home for about 60 days and you’ve brought a whole new level of crazy to this house!  In a good way, of course.  After having just your sister here for six weeks, you really shook up the place.  But it’s been awesome – there is no other word to describe it except awesome.  Both of our babies, under one roof, and we don’t even have to shower or get out of our pajamas to see you!  Mommy knows where your allegiance lies, too – and we’ll keep your preference for Mommy our little secret… 😉  You have such a serious look to you most of the time, but I think it’s because you’re a thinker and you’re taking everything in.  Also, you know how to play the game.  Don’t give us an overabundance of smiles or laughs because then we will get saturated – dole them out occasionally and it brings you more attention and accolades.  I’m onto you, little man.  You devious little dude…  Let’s tell the peanut fans about the HUGE strides you’ve made since busting out of the hospital, okay?

Birth, 1 Month, 3 Months, 6 Months

Health

Colton is currently 13lbs (seriously) and 22 1/2″ long – a change from the 1lb, 13oz and 13″ long he was at birth.  He maintains about a 2lb advantage over his sister and man – is he a STRONG baby.  It’s like nothing I’ve ever experience – 13lbs of pure strength.  He is eating 6oz (seriously) of Elecare thickened with SimplyThick every 3 hours and is growing steadily.  He, like his sister, is sleeping through the night – usually from around 9:30 / 10:00pm until 6:30/7:00am and it is AWESOME.  It’s amazing how sleep can make for a happier Mommy and Daddy!  Three weeks ago we got the green light to send the oxygen machine and canisters packing along with the Sp02 monitor.  What a glorious day that was!!!  We only used the blow by twice in the first week he was home (and maybe a few times to help wake up Mommy and Daddy haha).  The monitor was more annoying than helpful so once we were comfortable, we switched him to the Snuza Halo like we use with Keltie and turned the monitor off.  Colton did come down with a virus the first week he was home – and I’m 99.99% positive I gave it to him.  I got pretty sick the first few days he was home and then he spiked a fever but we were able to break it and aside from pooping on me and the NP at the pediatrician’s office (gross, awful, large quantities haha), we escaped unharmed.  He also had a tough reaction to his 6 month vaccines with a pretty high fever but infant Tylenol helped and he was back to himself within 24-48 hours.  Colton’s ROP has regressed (yay!) but his vessels are slow to grow in the eye that wasn’t treated with the laser surgery.  His ophthalmologist isn’t concerned but will be seeing him again in October to check on the growth.  Hopefully by then he will be cleared and he will join Keltie on an annual basis.  This week we brought him for a surgical consult – prior to leaving the NICU, he had hernias that would come and go.  So this was a follow-up to see if he needed bilateral repairs (like Keltie had) and the hernias were not there so he is all set!  We will, however, have him circumcised in December (Merry Christmas, Colton!!  Ugh…) and that will take care of that as long as his hydroceles resolve which they already look a lot better.  Tomorrow we have a GI appointment and I’m going to ask about his delayed emptying and possibly trying a new Prilosec-like medicine that is out called First Omperazole.  Unfortunately, the swallow study he has on the 28th doesn’t coordinate with GI so it’s all separate.  Kind of annoying but it is what it is.  We are so hoping he has matured his swallow and has no more aspiration of thin liquids, so keep your fingers crossed for good news on the 28th!  I know it sounds like a lot going on with the big strong guy but it really isn’t – he is really healthy, tolerating his severe reflux really well (he learned to clear his throat) and is a completely different baby than what we took home.  No real arching in pain (he arches when he’s pissed), no reflux attacks while he sleeps, and you can tell he is generally more comfortable and happy.  Although very serious, deep down he’s happy!

Development

Hanging out in my bouncy seat!

Colton is doing awesome on his developmental milestones!  He sits up well on his arms and holds his head up for longer periods of time.  He thoroughly enjoys admiring himself in his mirrors and has been moving / kicking his legs to try to get somewhere.  If only he realized he has to move his arms, too!  He is doing well in his rolling attempts but tries to use his back muscles more than his core muscles to roll, but I’m sure that will come really soon.  He tracks his toys well and does awesome at reaching for, shaking, and “playing” with them.  His most favorite toy is his O Ball rattle – he flips over it!  He spits up a lot for long periods after he eats, so it can get messy doing tummy time, but we also play with him while he’s in the Bumbo or his bouncy seat and he loves laying under his musical gym and watching the lights and reaching for the toys.  We continue to work on his rolling with less arching / use of his back and sitting up unassisted.

Personality

Hanging out and kicking!

As we have established, he is a bit Mr. Serious but I’m sure some of that is the fact that he is refluxing all day long.  He truly is happy and gives the best coy, shy smile and a great giggle.  He loves to kick, kick, kick in the morning and really enjoys playing with his toys.  As we established in the NICU, he loves swinging in his swing, too.  One new thing we’ve found is his interest in the TV.  He enjoys watching SportsCenter with Daddy and even settled down and watched Ice Pilots after having a bit of a fit the other night.  He absolutely loves the outdoors and has enjoyed visits to the beach and swimming in the pool.  Swimming just may be one of his favorite things! 

I can’t get over the difference in Colton – you can just see he is feeling so much better.  I think, although he still spits up in large quantities all.day.long, he is learning to manage it better and is, in return, a happier boy.  I wish you could tell his strength through the photos – he is SUCH a strong boy.  Pretty soon he’ll be bulldozing his sister and stealing all her toys!  Colton and I shared a lot of late night talks when he first came home and we still have our deep conversations about life, toys, bottles, binkies, and why he feels the need to poop right after I’ve changed his diaper.  I love his babbles and look forward to his (messy) snuggles.  He’s Mommy’s man.

Collage of Colton over the last 6 months

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Oh Miss Keltie – my have you grown!  It has been 6 months, 3 weeks, and 2 days since you decided that you truly wanted OUT.  I think I remind you of that fact on a daily basis and I am so thankful that I *can* remind you of that fact on a daily basis.  I took some time to look through all 800+ pictures I have of you and your brother that were taken over the last six months and I must admit, it has been the longest and shortest six months of our lives.  You’ve put us through the ringer but oh man is it ever worth it!  You already know how to work it – with that ridiculously huge and gummy smile, you can essentially get anything you want.  I wonder if you know that yet?  Probably.  We’re screwed…  Anyways, let’s do a little rundown of how you’ve been lately!

Birth, 1 Month, 3 Months, 6 Months

Health

Keltie is currently 11lbs and about 22″ long – that’s quite the difference in almost 7 months and from starting at 1 lbs, 9oz and 13″ long. She has been doing really well and is growing at a good rate.  She is eating 4.5oz of Neosure formula every 3 hours and is tolerating her vitamins and medicine each day.  She has her blood pressures taken weekly, but will be moved to every other week after her appointment with her renal specialist next week.  Her blood pressure has been stable so it looks as though the nephrocalcinosis isn’t affecting her much and she’s outgrowing it.  She graduated from the ophthalmologist as well!!  Her ROP has totally resolved and her vessels have grown in well in both eyes.  We are so happy she avoided the laser eye surgery!  Since coming home she truly has flourished and has been a healthy little girl.

Development

Hanging in my Bumbo

Early Intervention has been coming for the last two months and we have seen great strides in Keltie’s development.  Their developmental specialist, Sheila, has done a lot of work with them and we continue to work on the skills she targets each week.  Keltie currently tracks her toys and people well and is doing great reaching for and batting at toys.  Her tummy time skills did leave a lot to be desired, but with dedication from Mommy and Daddy (and the help of using her Bumbo under close supervision), she is finally pushing up on her arms and holding her head really well.  And, on Wednesday, Miss Keltie rolled from back to tummy!!!  We were SO excited!  We continue to work on head / neck control, rolling, and are now working on sitting up unassisted. 

Personality

Smiling is my favorite!

Keltie is a hambone.  As soon as she figured out smiling, she decided that was her most favorite thing to do!!  She smiles all the time, most of the day, and even has worked in a really cute laugh!  She likes laughing at peek-a-boo and other silly things Mommy and Daddy do for her.  She is such an “easy” baby – she is pretty laid back and likes to just take it all in.  Keltie’s second favorite thing to do is cuddle.  In fact, I had been trying to work on this entry while she has been laying on my left shoulder asleep and it didn’t make for a comfortable typing position…but she’s worth it so I waited until Daddy took her to bed to start.  She is learning her voice and doing a lot of cooing and shreeking!  It’s simply amazing to see her coming into her own little self.  I laugh and cry every time she laughs – it amazes me.

Overall, she is doing awesome and is a great little girl.  We are so blessed to wake up to her each day, to be showered in her smiles, and consumed by her cuddles.  She is perfect. 

Collage of Keltie over the last 6 Months

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