Tuesday, March 4, 2014


We saw Ella's Developmental Pediatrician (DP) a couple of weeks ago.  Based on that visit, along with my list of questions for the doctor, we have a laundry list of action items over the next several weeks.  I'll skip the various debacle of clarifying orders and scheduling only to tell you to have a clear understanding of the tests the doctor wants before leaving her presence and question everything as it is scheduled, even if it is a pain in the ass.  

My goal for all of this is to make sure that our current action plan (Weekly: PT2x, OT2x, CBRS/MT 1x, ST 1x; Monthly: VT1x) is the best plan for Ella's needs. This not only involves the frequency of her therapy visits but also the focus.

At the same time our OT who has been with us for 18 months told us she is moving to a new job. We are sad to see her go but open to new perspectives a new OT may bring.  I investigated clinical OT a bit but was disappointed in response time and scheduling availability.  I decided to go with the home therapist recommended by the company our previous OT was with but after a week had not been contacted by the new OT.  I got a call tonight from the 'clinic' owner stating the new OT decided home therapy was not right for her.  Now I am back to trying to find a new OT, the 'right' OT while trying to make sure the gap in her therapy is as small as possible.  This is our first week without OT, hopefully I'll have something new scheduled for next week.    

Ella had an EEG last week. While she wasn't crazy about it, she did better than I expected, with LOTS of singing and diversion techniques during the long wait with the prongs all over her head.  No results are available from that test yet.

Next Tuesday morning Ella is having a MRI.  She hasn't had one since she was 3 months old. Given her continued delays her DP and I want to compare against her baseline. 

Today, in addition to her ISFP review which occurs every 6 months, Ella had a Speech Evaluation, as ordered by the DP.  

Speech has been becoming a sore spot with me for the last month or two.  All of our other therapists have continued to ask what ST is working on... well, she is working on feeding.  It took me quite some time (back in NICU days) to figure out the correlation between Speech and feeding and why ST's were visiting us focused on feeding when she was just a few months old.  Now I do understand that there is a direct relationship between speech communications and feeding - how you chew, swallow, move your lips, jaw/teeth independently, move your tongue to shift the food in your mouth, etc.  

Several months after coming home from NICU, we went through 2 other ST's (quickly) before finding our current ST... I'll call her ST3.  ST3 comes once a week for 20 - 30 minutes and generally observes us (me and/or Nanny L) feeding Ella. She has helped us with ideas of new foods to introduce, where to place the spoon, how to introduce a straw, how to support her jaw.  She was key in providing tips for me to figure out how to stop needing our painful WIC appointments to get Ella's expensive specialized formula and get a Rx to have it delivered to the house instead - a HUGE win! She also advised me to reapply for respite care last summer which was actually approved just this afternoon... 

All of this said... she's never been 'hands on' with Ella like her other therapists.  Until recently Ella would get upset when she arrived at the house, even though Speech is by far her 'easiest' (not demanding) therapy, watching us feed her and offering tips.  Ella is quite the babbler, she makes clear choices and lets me know when a song she doesn't like needs to be changed on the iPod.  She understands a lot and is trying to communicate more and more.   Ella will be 2 in less than 5 weeks...  she's been doing some types of communication (mimicking back "I love you" for the better part of a year).   Her other therapists have helped guide me in all of these things in addition to using signs, but for Speech Therapy, all we focus on with ST3 is feeding...     

With the questions being asked about ST from our other therapists I began asking ST3 about other interactive ways of communicating.  I'm the parent… I don't know what to expect with ST, what the various approaches are, that's why we have therapists, to help guide us through the type of work we need to do with Ella to give her every advantage to conquer her delays and meet milestones!  

ST3 answers my questions by saying we can do play therapy to incorporate speech/communications but then drops it.  I had to be away from the house yesterday but asked Nanny L to have ST3 start the play therapy during her session that day.  Nanny L reported back that ST3 seemed off-put and indicated she needed to do a new type of evaluation before she could do that due to billing codes (never information offered when I asked about other ST approaches previously).  

So... based on our DP's orders, we had a new ST evaluation today, in clinic nearby.  Ella was evaluated at 3 -9 months communications with 9+months comprehension (of instructions).  Remember, Ella will be 2 in a month!  When I explained what type of ST Ella was receiving today... 20-30 minutes a week, feeding focused, the evaluator was trying to keep her jaw from hitting the floor (Nanny L later kept referencing the look on her face).  The evaluator, I'll call ST4, wants to see Ella for 45 minutes 2 times a week for play/interactive communications therapy.  

I really like ST3... but I know it's not about MY relationships.  It's not about my desire to avoid conflict/confrontation.  It's about what is best for Ella.  I need to let ST3 know that we are taking Ella's ST in another direction.  I also know that I am not committed to ST4... but we will give it a try and wait until we can get the videofloura (another test ordered by DP to be followed through by ST4) and then reevaluate from there.  

On a happy note, we are about to hit 6 months with Nanny L!  She has been a blessing for carrying through with Ella's therapy homework throughout the day, every day during the week.  She is such a big reason Ella is doing so well… 

At the same time, with her 2nd birthday coming soon, Ella still looms at under a year for all of her developmental milestones.  But every day she works very hard to make progress.  

Two weeks ago she started counting… she will grab your fingers that you put in front of her face when you count (typically with a song) 1-2-3-4-5…  This is HUGE!  I attribute this to her music therapy based on what we have been working on over the last months.

She will also fist bump as a form of celebration.  She will put her hand/fist out to you (upon prompting) so you can bump it and go "boom".  I've taught her this in the last week or so… she really gets so much… she is just trying to get better muscle control for among her arms/fist/grasp more accurately.  That comes with increased trunk strength.  

We just found out yesterday that Ella needs glasses.  That's another blog post… but I'm working on getting the proper measurements so we can get a good pair ordered for her.  That will probably help with her depth perception.

Pictures are still on my phone.  I'll have to update the post (or a new one) with pics later. 

Tuesday, February 11, 2014

My Tubie's Tube - A Love/Hate Relationship

It is Feeding Tube Awareness Week.  

I have missed posting on so many different Awareness Week's that we are impacted by in recent months.  So many other very important Awareness Days & Weeks.  Honestly, for this post, the timing just worked out, between my thoughts and a little bit of time to jot them down.


I HATE Ella's G-tube.  I hate that she needs a feeding tube.  I hate the constant nagging worry, every second of every day, that her tube will inexplicably come out, unnoticed... requiring a STAT trip to the ER and possible surgery to replace the button I hate.

I HATE that in nearly every touch I have with my child... every time I hold her, hug her, I subconsciously feel her tummy to make sure her button is still where it is supposed to be... where it is NOT supposed to be, attached to her.

I HATE that I know her trouble, to this day, with tummy time has to do with that button on her tummy.  After she has had time on her tummy I will pick her up and she will have red mark indentations on her tummy like someone who is wearing too tight jeans.  Can you blame her for not wanting to spend a lot of time on her tummy?  For not wanting to crawl, dragging negative friction against the button stuck through her stomach wall?  

Is this the reason why she is so delayed developmentally... because spending time on her tummy to work her core strength, her upper body strength, her lower body strength, because it causes her discomfort?  

I don't know, but I suspect it is to blame more than the professionals do... they say it makes no difference... I KNOW that it does. 

I hate that it's next to impossible for me to get a "random" (not her nanny) sitter for an evening or weekend because I can't be gone more than 2-3hrs max (depending on when I would leave), as she may need a bolus feed every 3 waking hours.  

I LOVE Ella's G-tube.  I love knowing that regardless of what she accepts in her mouth that I can ensure she gets her nutrition, hydration and medicine.  I LOVE that she does not need continuous feeds delivered throughout the day/night via a pump tied to a pole/backpack.  I love that I don't have to wake her to give her medicine (which is too often during overnight hours)... 

On a side note, I also LOVE that when I do wake her if I didn't put her to bed with her button extension inserted and tucked into her diaper tape, that she will wake slightly, look at me with a recognition and acceptance only for me and drift right back off to sleep (90% of the time).  

Whenever I bring on a new nanny or even sitter, I keep a spare button set to show them how it works.  I think that understanding that there is a little bubble of water inside her tummy that keeps the button in place helps caregivers feel comfortable with the foreign object on her tummy.  I orient caregivers that the button is fine, they don't need to worry about it but they need to be aware of it.  I tell them that it wont come out... but if it does, it is an emergency situation.  

I have intended to make my own video showing how to bolus feed Ella but have never had enough hands to do it - when thinking about it.  One of these daya, maybe I'll do it.  On the other hand... maybe we will be done with the tube before I ever get around to it.

Ella is eating well... chicken, baked potato, cottage cheese, mac & cheese (a whole shell).  She is finally taking (some) of her bottle from her nanny and even her snow-sitter (aka, occasional sitter), I just can't get her to drink more than an ounce or two from a straw/sippy cup.  My new mission is to get her off bottles and drinking enough volume from straw/sippy cups... while I've read a ton and have weekly Speech Therapy to help, I'm certainly open to any ideas readers may have on this topic.

A newfound way Ella enjoys tummy time (in her new playroom)…. Watching Baby Einstein's Baby's First Moves video, her favorite (and only) video she loves! She will even sometimes wave and roll along with the babies on the video!

Snow day in Charlotte today

Mommy thought she had a great idea for a makeshift sled… infant tub on a picnic blanket. Not so much, says Ella.  Creative ideas for sledding with a child who doesn't quite sit independently?

Thursday, January 16, 2014

Happy New Year!

I've been wanting to knock out a post before the craziness of tax and consignment sale preparation take hold.  Actually, I still need to write Christmas thank you notes...

So a blog post it is!

Now that it is 2014 I am able to say it out-loud (or in writing):


Can I get a Whoop! Whoop!?

We may have to lead a boring, restrictive life at this time, but it is SOOO worth it!

Ella is still making good progress in her development.  This is such a blanket statement... what does it mean?

Ella is making progress to those who know her best (her mommy, nanny, family and therapists) and to those who don't see her often (friends).  

The progress wouldn't be noticeable to someone not invested in paying attention. 

Last Spring I was certain she was close to sitting independently...  she is still not sitting independently.  She can prop sit, shift her weight from one side to another (a bit) and even sit without using her arms, for 30 seconds to 3 minutes.  You just can't leave her unassisted for the moment she topples over without trying to catch herself.  

Ella's trunk strength has improved dramatically.  The connection between her hips and trunk is still not 100%.  She will now roll unassisted from tummy to back BOTH DIRECTIONS when she wants to do it (more and more often).  She CAN roll from back to tummy but is not motivated to do it yet.  A small queue on her hip will get her to fiip that way.  This is big progress in the last few weeks!

99% of the time I (or nanny) am on the floor with her.  The thing that is hard, but good for her is to get her settled on her tummy and walk away for a minute or two.  She gets pissed off and MOTIVATED to move!  

Ella bears weight on her hands & knees well with some support.  She has recently tried to reach forward and move her legs at the same time, but I have only seen this a few times in the last few weeks.  

We did just buy our first pair of shoes (SNEAKERS) to use with weight bearing exercises in preparation for standing/walking!  It's a long way off but the exercises to get there are well underway.  

Grasping/Visual Motor/Cognitive
Our OT just did a re-evaluation this week, she measured 7 months in Gross/Visual Motor skills.  Ella is much stronger on her left side than her right side.  The connection between her body and brain is stronger on the left.  Her hand has opened up on the left.  

Ella understands simple commands.  She knows what to do when you tell her to 'turn the page' and is just getting past the stage when all she wants to do is turn the page when reading a book (story, who needs a story when I can turn the page!). 

We saw the GI this week and he told me that while she is a SBS child he is now seeing her more for her oral aversion than SBS.  I was pleased to hear this because 1) she is making good progress with her eating and, 2) she is doing fabulous for a child missing a large amount of her intestinal tract!

We still struggle with BO (Bacterial Overgowth) which requires a routine cycle on/off antibiotics.   This is very typical of people missing their ICV (Ileocecal Valve - I still have to google how to spell that), the valve in your intestines that keeps the bad bacteria from your colon from going back into your small intestines.

Ella is doing a good job being open to new textures... adult oatmeal, baked potato, rotisserie chicken, yogurt, veggie sticks, mum mums, etc.  She still prefers Stage 2/3 baby food.  Her favorite changes every few months, currently it is Pumpkin & Spinach.  

I have been a bit afraid to introduce more foods for more reasons than I can't get into right now.  It's really difficult to figure out if a SBS child tolerates these foods.  After this last GI visit I feel ready to begin introducing more table foods. I'm just happy that she is open to new textures and chews (she likes to watch me eat something first).  

We actually shared a dinner plate tonight for the first time.  Rotisserie chicken and steamed Cauliflower!  And, of course, Pumpkin & Spinach puree.  

Ella still takes her bottle primarily, along with tube.  We continue to try a sippy/open cup which she will use, but not take a large volume.  We are going to reintroduce the straw cup to her... She has just started to take a bottle from Grandma and the nanny (anyone other than me) for the first time since last June - when she feels like it, that is.

I do not discuss this subject because if I do I PAY for it! Let's just say, I can't complain (unless I discuss it).


Ella is 21 months old.  On a Gross/Fine motor skill scale she's 6 - 9 months old (as best I know at this time).  Cognitively I believe she is a bit ahead of that.  

Her favorite (most consistent) word is 'hi'.  No is also a frequent word.  She still says 'ma' sometimes.  She says 'dog' on occasion.  She babbles a lot, especially if I am talking/on the phone (if the nanny needs to leave early and I'm still on a work call - she talks up a storm while I have to talk).  

I still use the infant tub to bathe Ella.  I'm looking into our next stage options.  I really think I want a bath ring although I understand they are controversial.  For Ella's needs I think it is the best option (better than a laundry basket or inflatable tub).  While I will never turn my back to her during bath time, I sometimes need 2 hands for 5 seconds (to get her conditioner or towel).  I just feel like a ring will be better for her as she can sit but not 100% unassisted.  Thoughts?

I'm still very dependent on our wonderful high chair.  I had no idea when I bought it (at consignment) how well it met our needs.  It has wheels on all legs that are 360 degree rotatable. I didn't realize how great it was until Christmas when I borrowed a high chair with wheels (turns out wheels were only on the front and only went front/back, didn't swivel).  

The high chair gives us both freedom to move around the house without me having to hold her constantly.  It allows me to bring her with me to run to the potty... to take a shower... to prep her bottle/food.  Think about it.  Otherwise I have a 21 month old child that I have to have a clean, soft surface to lay her on in order to set her down anywhere in the house!  I LOVE our high chair!!  

We went to FL for Christmas to visit my family - my first time back in 2 years, since I was 10 weeks pregnant!  Grandma flew up and made the trip with us, which made it MUCH better (26+ hours round trip)!  We had a great time playing on the new swing at Grandma & Grandpa's house.  We enjoyed having a few meals on restaurant patios.  Ella met many friends and family for the first time.  We even got to the beach, although the water was too cold.  

Our nanny has been with us for a little more than 4 months now and we still LOVE her!  I will attribute much of Ella's progress to her consistency in following-through daily with all of our therapy exercises. And she is as much of a germ-a-phobe as I am, which is nice to have someone here who "gets it". 

Grandma went in 2 weeks ago for minor bone spur surgery on her shoulder.  Recovery was supposed to be: 1) a sling for 24 hours 2) PT for 2 weeks.  Turns out their was a rotator cuff tear.  Recovery will now take months.  We are all thankful that she waited until after Christmas to have the surgery (surgeon wanted to do it before)!  She seems to be doing well with her recovery already.  She sees the doctor next week to map out her revised recovery plan.

I'm sorry I'm such a bad blogger these days.  Besides finding the time to blog, I have not found the motivation... I want to blog (I compose posts in my head every day), but I struggle with what to share.  This is Ella's story now.  I want to share, document our story and blog to help other micropreemie and SMC moms but I have not figured out how to do that while balancing Ella's right to privacy.  

Christmas Picture!

Christmas Picture - nice prop sitting, weight shifting!

The swing in Grandma & Grandpa's front yard!  Swing! Swing!

On the beach (with my 2 oldest friends), reading our favorite book.