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?

Our second set of NMES is over!

Last week we finished our second round of NMES therapies!  Three times a week, forty-five minutes a session, for a total of 24 sessions.  That's a lot of driving and a big chunk of time out of every week that we now get back :)

Baby W was much more cooperative this time--he still dislikes having the electrodes on his neck but he didn't fight them as much and almost all his sessions went the full amount of time.  I think it helped that they got better food this time :p  He had more things that were like he gets at home (fresh fruit, cheese, meat, etc) instead of all the snack-type processed foods he likes in small quantities while he waits for the "real" food to get done ;)

Iz did better this time, too--she really struggled to make it through his therapies the first time around and some pretty severe behavior problems cropped up.  This set, though, she still struggled a little but she was calmer about it and never reached the point where they had to kick her out.  And our last few sessions have been really really good--she has been calm and focused and occupied herself fairly well.  I think that is in large part due to her officially starting to see the boys' psychiatrist.  She had a sudden and severe escalation in anxiety that was manifesting as extreme aggression.  When the Developmental Pediatrician fought to get her in preschool, he hoped it would help temper her anxiety but also said it was possible it would not get better and we would need to look at medications to help her function.  The psychiatrist (who knows her pretty well as he spends a good chunk of time with her every few months when she goes to her brothers' appointments with them) has been keeping track of her as well and he said its very clear to him that she has ADHD like her brothers (my, did we ever hit the genetic lottery in this family.....) as well as the anxiety.  She started a low dose of Focalin and wow, what a difference.  She sat down with a book and spent a good half an hour going over the words with me and memorizing them and identifying the words and letters she could remember.  Before, she couldn't even sit still to listen to a story.  I remember when S started ADHD meds--it actually helped lower his anxiety levels because he wasn't so nervous about doing well in school.  Be nice if that was true for Iz, too!  Right now, she spends half  her day at school (and she's only there for half a day) trapped in her own  head, unable to get past the anxiousness.  She LOVES school but its so so hard for her right now--I'd be so happy if she could actually enjoy it and get something out of it.  She's a smart kid (above average when tested for intelligence) but her abilities are low because she's not able to fully participate. 

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 :) 

Feeding therapy is going well.  He is showing signs that his body is working to keep his airways clear so there's hope that when we repeat the swallow study over the summer, he may be able to ditch the bottles and go back to "normal".  He hates them oh so much :p  He's been gaining weight as well and I finally finally finally can stop buying size two diapers!  Next pack I buy will be threes :p  I know it may be a strange thing to celebrate but I'm betting parents who had a slow grower "get" it :p

Iz is doing well with her occupational therapy and is (mostly) invested in doing a good job.  We've started Stick Kids at home and she's excited about learning the new activities.

My Busy Little B is struggling with sensory stuff so bad right now.  Last week it caused a complete shutdown at school--they called me when he stayed in the same position for over half an hour.  When I got there, he was sitting up but curled over and obsessively digging at his toe with his fingernail--I'm surprised he didn't draw blood :\  I called up the pediatrician and got an OT referral--he goes in tomorrow for an evaluation and hopefully will qualify for some therapy to help him deal with the sensory overload.

Baby W had another feeding therapy appointment today for the NMES therapy.  They put electrodes on his neck and it delivers a small current to stimulate the muscles while he eats/drinks.  It is similar to the machine they used on my knee many years ago as part of my physical therapy (come to think of it, I had it on my wrist even more years back from that).  I think if I hadn't had similar therapy myself, I'd be nervous about this but when I did it, it was rather pleasant as long as they amp it up slowly and don't go too high.  The SLPs working with W pay close attention and if shows signs that he's aware its gone up, they dial it back down.  He's comfortable and he likes the bigger variety of foods they bring.  He's now a big fan of those veggie stick things and corn puffs.

The biggest problem we have during feeding therapy is Iz!  She feels very comfortable with the SLPs and she remembers speech therapy as fun so she thinks the appointments should be all about her.  Negative attention is still attention so she's been acting up trying to get the attention back on herself.  She really wants the SLPs to focus on her and do activities with her.  I set her up at the table with W with a snack and eating with him keeps her occupied for a short time but his therapy is 30-45 minutes and it does NOT take her that long to have a snack :\  Today's SLP did get out some "therapy toys" and that made Iz happy and she played (mostly) quietly at the table for a while.  Perhaps once the newness wears off it will be calmer.

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.