At least it wasn't six?

After yesterday's six appointments I could have used a break but, alas, it was not to be!

We started our morning with physical therapy for W.  We were meeting at a new park and ended up having to cut through freshly mown grass to get there while the guy was still cutting the big side lawn near the playground.  For most this would not be a problem.  For me, fresh cut grass is an asthma trigger.  Trying to climb a big hill whilst holding's ones breath is harder than anticipated......  It wasn't as bad as it could be--I had a lot of throat clearing but no wheezing so I got lucky!

It was actually an excellent park for W to work at.  Lots of variety in equipment, hills, ledges, stairs.  He got in quite a workout without even realizing it :)

We did a grocery run next (always super fun with all four under foot) and stocked up, especially on veggies.  My little bottomless pits will have plenty of snacks.  I did, however, hide my hummus because I'd actually like to eat some of it this time.  Once I've gotten some, they can have at it but I get to go first!

Then off we went for Iz's regular check-in with GI.  Everything is going well and she gets to go a whole six months before her next visit!  She was a bit disappointed there are no changes to her meds but better they stay the same than go up, yes?

We went home for snacks and quiet time and then we were off again to take the Super Kid (he can't make up his mind what he wants his nickname to be) to back to back appointments for speech and occupational therapy.

It was so tempting to do the whole dinner out thing again but I behaved and went home and made Taco Tuesday (and now you know how many days behind I am on posting about things LOL)

Another GI visit

W had his checkup with GI a few days ago.  It was a pretty good appointment--he continues to grow, albeit very slowly.  Dr A is pleased, though, because it IS growth and he's sticking to his "new" curve.  He's four point something percent on the growth charts and that percentile creeps up slowly so he periodically jumps up to the next curve.

He saw a nutritionist the other day but not his normal nutritionist.  She wanted me to put him on a low fat diet.  Said if we were really worried about calories, I could stir vegetable oil into skim milk.  Told me to push whole grains on him, particularly whole wheat bread.  His neurologist wants him to avoid breads and some other grains because they can trigger migraines and he just started treatment for migraines--the nutritionist said she'd never heard that and he needs more grains.  I must admit that the nutritionist annoyed me :p  GI advised that I not listen to her because her advice was contrary to what GI and W's regular nutritionist want and goes against what we are already doing that has proven successful.  I was already planning on ignoring her since much of her advice was outdated but GI was also adamant that we ignore her--keep the whole milk and butter, avoid migraine triggers, and keep that boy growing :p

We've scheduled his next swallow study for August 10th.  We are cautiously optimistic that his swallowing has improved due to his habit of stealing unthickened drinks and hiding while he drinks them--while we try to prevent that, it happens and he's been doing ok.  No infections, no major choking/coughing spells unless he spots me coming and tries to chug it.  Dr A has relaxed so much about his getting some unthickened liquids (he's still nursing, steals drinks, etc) because he's never ever had any type of respiratory event because of it.  We are really really lucky because I know lots of kiddos (and adults) who aspirate have to deal with aspiration pneumonia and tons of respiratory issues and we've managed to avoid all of that.  Perhaps because his aspirations seems to be a muscle coordination issue so it doesn't happen often?  Even on his swallow studies, he has lots of swallows that are just fine and then one will penetrate, sometimes shallowly, sometime deep.  I just hope its better because he HATES the thickener.  Hates it so much :p

And the other kids have discovered their favorite day!

Physical Therapy day!  We met Miss C at the kids' favorite park.  She said she's lived and worked in this area for a really long time and didn't know the park was there.  It was a good one to do PT at because there were several activities for  him to do to work on his goals and the three older kids had plenty to keep them occupied as well.  We arrived fifteen minutes early and W had worked out some of his energy so he was more focused on what Miss C wanted from him.

Miss C told us about another park near our house that we didn't know about with a good playset and a splash pad.  I bet we'll get plenty of use out of that one over the summer!

Miss Iz was supposed to see her GI after PT but we got the call that Dr N had a family emergency so we had to reschedule for August.

Miss Iz had her PT session in the afternoon and it was a little rough.  She was just so over all the exercises and activities.  Miss N got her attention by promising to show her something new if she did her work and that got her motivated and she got to try out two new exercises (rocket ship and dolphin).   Dolphin was too difficult but she had fun with rocket ship.  Miss N and I are thinking the last few sessions have been more difficult because she's getting bored with doing the same few things over and over.  There's not a great deal of wiggle room in what she can do but maybe if we change up the routines just a bit we can get her attention and cooperation back.

Swallow Study

Earlier this week W had his swallow study.  When I scheduled it I didn't realize it was a no school day so the whole crew came with us!  We couldn't find a parking spot at the Children's Hospital so we ended up parking the next hospital over and walking.  It wasn't too bad outside so they enjoyed the walk.

W was absolutely fine until we got to the room and he saw the tiny hospital gown--perhaps he had flashbacks to last week's ear tube surgery?  The gown was just to slip over his clothes so he didn't dribble barium on his clothes but he didn't care--that thing was NOT going on him.  A nurse helped me get Flailing Baby into the chair and strapped in and we draped the gown over him.  He finally calmed down when he realized they were getting him a drink and he was fine after that.  Unfortunately, he failed the swallow study :\  He had a penetration all the way to his vocal cords very quickly on nectar liquids (his current level of thickening) so we didn't even get to try thins *sigh*.  The speech therapist conducting the swallow study said to keep him on nectar until we hear from GI.

So when GI called, they said that when he took small swallows, he seemed to do fine on the video, that penetration was a big gulp so they want him to use a sippy cup or straw cup with a valve to limit how much liquid comes out at once.  Unfortunately, we have both and he will not drink out of either.  He's stubborn, too--when he decides he's not going to, he will just not drink for days.  So they recommended we got back to using the very thin straws he used to drink out of instead of the bigger ones he was finally agreeing to use :p  We will wait a few months and then do another swallow study and see if he's made any progress but she doesn't feel another round of NMES will be helpful since this last round didn't make much difference for him.  So we wait and continue to thicken. 

Again, my day was talking about poop

Of course, the fact that we were seeing GI probably had a lot to do with it :p  Even though Baby W sees GI for reflux and aspirations, we still talk about poop an awful lot.  Pretty sure GIs are just hardwired to talk about it LOL  Baby W has a different GI than Iz so we spent some time with Dr A this time around.

Baby W is officially off Prilosec! WooHoo!  Dr. A lowered his dose last time we were in (Dec 1) and I asked her about doing a trial completely off to see how he did since even on days when he fought and spit and didn't get a dose, he wasn't really spitting up. She said no problem, see how he does so he hasn't taken any in months :)  At first, we had some minor spit up, maybe once or twice a week but its been a few weeks since he's spit up so he has officially outgrown his reflux and the meds are removed from his "currently taking" list.  His reflux was so very severe that we didn't expect him to have such a sudden turnaround.

Scheduling didn't work to get his swallow study before our visit so she can't change his thickening consistency or decide if he needs more NMES therapy.  Swallow Study is March 27th so a couple weeks to go and then she'll either call or email after she gets the results with the game plan.  We go back to see her in 4 months.

Oh, and he was a bit over 22 pounds today and moved up several percentiles on the growth chart :)  He's still below 15th percentile but this time last year he wasn't even on the chart so yay for progress, eh?

Where's Baby W?

We had a GI appointment for Izzy today (just her regular checkup visit to touch base.  Every three months, nothing exciting) and as always, Baby W was fascinated by the cabinets.  In some rooms, there are empty cupboards, usually where the sink is, and the staff have assured us they keep them empty on purpose because kids love to get in them so if there is an empty cabinet, W is so there :p

Usually he climbs in and will sit or lay in and watch us from his own private little cubby

Today, though, he took it a step further and closed the doors to hide from us!

And then he pulled his hands in and we could hear him giggling--he thought he was completely hidden from view.  He never considered we could still see his feet!

We played along, of course, and said things like 'oh, no, W is gone!  Where's W?  I can't find W anywhere!"  His giggles increased and then his tiny voice answered us back with 'hea!' (his version of here). And he pushed the doors open and laughed and laughed :)

Finally got the call

A few weeks ago, before we were even done with feeding therapy, one of the therapists submitted the request to get the swallow study scheduled.  She knew we were nearly finished with our prescribed number of sessions and wanted to get the ball running.  She and her colleague would periodically ask if I'd gotten the call to schedule but I never did.  Feeding therapy ended, still no call.  Finally, I called them last week to see what the hold up was.  They never issued an order for the swallow study so the clinic didn't know they needed to schedule one *sigh*

The GI was out for the week so I had to wait until this week for her to return and decide whether or not to order a swallow study.  Got the call finally but now all the spots are filled so March 27th is the date :\  I know the therapists were hoping for soon after therapy ending (hence why they sent over their request for the GI to write an order so early) so if he's ready he can finally come off the thickeners.

Ah, well, at least he's used to the thickeners.  Even if he is constantly trying to snitch unthickened drinks :P

Much has happened!

I am shamefully behind (again) on updating so of course there is much to share!

Baby W had another swallow study done in the beginning of December.  We were hoping for improvement, perhaps even an end to thickening his liquids but, alas, this was not meant to be.  He had gotten worse in some areas, enough that technically he should have moved back to honey thick liquids instead of the nectar he had been on.  However, his GI decided to leave him on nectar because she was putting him back into the NMES feeding therapy and he responded so well the last time she felt he could stay on nectar since he improved on NMES last time.  So back to three times a week for three months!  We just started on month three so the end is (sort of) in sight.

I asked about possibly trying to go off Prilosec since Baby W's reflux seemed to have improved--she said we could do a trial and see how it went and he has been doing fantastic :)  We get some minor spit up maybe once or twice a week and even that is becoming less common.  I am cautiously optimistic in saying I think maybe we might be done with reflux meds.

The other big thing is GI ordered a sedated MRI for W--between the swallowing issues and developmental delays, she wants to get a look at his brain and nerves and all that to rule out some possible causes.  She said if I really wanted to, we could wait to see how he does with this round of feeding therapy because chances are the MRI would be perfectly normal.  My reply was that "chances are" is not our friend because our family tends to fall into the "somebody has to be the statistic" category ;-)  I told  her about Izzy's MRI (neurologist wanted one to rule out things but told us chances are it would be normal--nope, not normal) and that settled it for her--she wanted to get it now rather than wait for it.  With Mr. Piper living in another state for work, it was a bit of a job getting a time set up that he could be here for so I wasn't juggling all the other kids but we finally got it set up.....only to have to cancel because W has been sick for a couple months now.  He has had the neverending ear and sinus infection.  Because of his swallowing issues, I was told he has to be under full anesthesia instead of just sedation like my Busy Little B and Izzy so he absolutely cannot be ill.  Three rounds of antibiotics later and he got the all clear this morning to keep his second MRI date on Tuesday.  Again, it took some maneuvering to get Mr. Piper here for this so *fingers crossed* that he remains well and we can get this done.

My Busy Little B had another overnight EEG and oh, my, was this one so much harder than the one he did just before W was born a year and a half ago.  In some ways it was easier--he understood more and so was trying to cooperate and stay in camera and so we were playing board games and built with Lego and did puzzles and watched a movie (Ratchet and Clank--he chose it specifically because his older brother really wanted to see it and B figured he'd be jealous LOL).  He ate his weight in food, I think--they told him he could order a meal whenever he was hungry, not just at meal times, plus they had a family pantry where I could go get him snacks and drinks and he took the "eat as much as you want" to heart.  I'm not sure where he put it all but he's been eating everything in sight at home as well.  I've started calling him the dinner vacuum because once everyone is finished, he polishes off any food left on sibling plates :p  Sorry, went off on a food tangent.  Anyway, the hard part of the EEG was the gauze that held the leads in place--it made a sort of helmet with a strap and he could not stand it.  During the day, reminders not to touch, pull, or tug on it were enough--he was fussy and grumpy about it but was easily distracted and redirected but when night came?  He cried and screamed for such a long time--Mr. Piper took the overnight shift because Baby W still needs mommy cuddles to sleep and he said B was inconsolable.  He even called me so I could talk to B to try to calm him down but I'm pretty sure it just made B even more angry.  They survived, though, and B was so relieved when the EEG ladies came to take it all off.  No results yet, though :\

Poor Iz has been really struggling with her anxiety the last few months and just about her entire team is scrambling trying to figure out why and how to help her.  It seems as though every few years the manifestation of her anxiety shifts a bit and we have to learn new strategies to deal with it.  Right after her heart surgery, it was panic attacks so severe she'd hyperventilate and pass out.  Then came severe separation anxiety.  Then came selective mutism.  Now we seem to be entering an aggressive phase.  Thankfully everyone is very committed to helping her so her school team and medical team are all trying hard to bring her back to a more even keel.  I really appreciate how the school not only asks about what helps at home but they work to incorporate those things at school and also share what works at school so I can incorporate at home--that consistency has been helping and we are again having more good days than bad :) 

Update!

**At Baby W's most recent GI appointment, he was able to lower his reflux meds and he's all the way up to the 6th percentile on the growth chart :)  He outgrew his newborn clothes but can still wear 0-3 months--its funny seeing a Timehop picture pop up for last year in the same outfit he's wearing that day :p

**Iz has finally started preschool.  She was so excited the first day until we walked in the door of the school.  Then she was a bundle of anxiety and fear but the teacher held her hand and coaxed her back to the classroom and the rest of the week went rather smoothly.  She says it is fun and has even learned a few kids' names

**My busy little B has done so well transitioning back into the school routine that they are ready to start his transition into a regular classroom again.  Like last year, he will attend for an hour in the morning at the local school and then return to his program for the rest of the day.

Baby W is slowing gaining some weight :)  He went to see GI and they upped his reflux meds and that is really helping him keep his food down.  She also referred him to speech therapy to do NMES feeding therapy.  He's gone twice so far and the hope is it will help him swallow normally so we don't have to worry about aspiration and thickening his food.

He also went to see nephrology to check out his kidneys and things look good there :)  His doctor is trying to rule out things that could cause him to be so small.  I think our next major referral is to genetics but that's not for a few months because they are really backed up right now.