HE PASSED!!!!!!

Today was quite the busy day!  We had OT first thing.  W was a little cranky--I had to wake him up at 6:30am to feed him breakfast because he could not eat or drink after 7am.  By the time Miss M got here, he was mad and uncooperative.  She was patient, though, and got him distracted enough to play a bit.

After OT, we were off to the Children's Hospital for yet another swallow study.  We do them about every 4-5 months and are always disappointed by the results.  W threw a big massive tantrum over having to sit in the radiology chair and refused to drink his barium solution.  He was so hungry!  They gave him a graham cracker and a car to take home and that calmed him down and then he drank 2 ounces of thin liquid in 17 seconds and had no aspirations or penetrations!  YAHOO!  They want us to continue to thicken for a few days at half the amount of thickener to ease him from nectar to thin but after that he is cleared to drink normally :)  The SLP did say to continue with his very thin straws for awhile since his last swallow study showed he only had penetrations when he took big gulps.  We are to watch for signs of aspirations, keep him on the controlled drinks via tiny straw, and when he's doing fine on thins with the straw we can slowly start a transition to thicker straws and open cups.

MRI

Yesterday was Baby W's MRI to check his brain/nerves to rule out possible causes for his swallowing difficulties and developmental delays.  We had a check in of 9am but an MRI time of 10:30 so we had lots of time for exploring his hospital room :)  Child Life brought him cars to play with and we put music on to listen to and aside from staff coming and going, he thought it was a fine and fun thing to be at the hospital!

Things got NOT FUN when they came to take him away--he had to sit on the bed to be rolled through the halls and tunnels (the actual MRI was in the adult hospital instead of the Children's Hospital) and he decided he was not doing it, nope, no way.  His Dad got on the bed and held him and he cried for a few minutes and then decided it was okay to calm down and watch since he was safe in Daddy's arms :)

Because of his swallowing difficulties he had to be under anesthesia instead of just sedation so when we got to the MRI room, they used a tiny mask to put him to sleep and then off to the waiting room we went while they got him intubated and set up with all his wires and monitors and IV.

He woke up MAD.  They said he started spinning in circles on the bed and thrashing and when they tried to hold him he was kicking and fighting.  They came and got me (the bed was only halfway through the doorway of MRI so he really woke up fast and fighting LOL) and as soon as he was in my arms, he calmed down, put his little arms around my neck, put his head on my shoulder, and was fast asleep and snoring in seconds.  So it was my turn to ride on the bed holding him while we went all the way back to the Children's Hospital.

It took him a while to wake up fully but once he did he devoured the breakfast the nurse ordered him (scrambled eggs and fruit) and then we were off home and he was absolutely fine the rest of the day.

Today they called--the brain looks fine, no abnormal anatomy.  But his ears are full of fluid again (we've been dealing with ear and sinus infections for months--he was finally clear last week but maybe not for long.....). 

Repeat swallow study

Baby W had his repeat swallow study :)  He's still aspirating occasionally with regular liquids but he's been cleared to drop from honey to nectar consistency and we are no longer restricted to just medium flow nipples!  He can do anything--sippies, straws, open cups.  Since he has come to loathe the bottle so very much, it is excellent news we can switch to other means :)

We go again in four months to repeat the swallow study to see if perhaps we can ditch thickeners all together

Guess it was my turn?

A few weeks ago Baby W has his visit with the geneticist.  Our new geneticist (although not so new anymore, I guess, since she's been our geneticist for over six months now) is also a specialist in endocrinology, which is one reason our pediatrician wanted Baby W to see her because of his growth issues.  She thinks he's a bit young to worry about anything genetic or metabolic, especially since addressing his reflux and aspiration helped him gain enough to get back on the curve (albeit on the bottom line) but because there's a family history of related symptoms that suggest we have some genetic stuff going on, she wants to keep following him and see him in six months.

While we were there, we talked a little bit about Iz since her DNA results finally were transferred over and I told her the pediatrician said to ask her the way the kids (and I) move in ways most people cannot out.  She asked me to take my pants off :p  She wanted to look at my joints and skin and then took a look at Iz as well.

Apparently it was my turn to get a diagnosis.  Ehlers Danos Syndrome Hypermobility Type.  She says Iz most likely has it as well but she's a bit young for a formal diagnosis because kids are naturally hypermobile and she likes to wait until they get older.  A lot of my joints have stiffened up as I age but they still move in odd ways and I'm prone to dislocation.  She gave me lots of info to take with me and read over and man, that list of possible symptoms explains a lot.  There doesn't seem to be much one can do about it but its still nice to have a name so the next time a doc says I must not have the symptom I say I do because they can't find a reason for it, I can say, look!  its this!  Or if they freak out over a symptom that is "normal" for me, I can also say, look! its this!   :p

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.

Well, Baby W still is not happy about this bottle thing but he is very slowly adjusting to it.  We got a script for ThickIt and he tolerates that better than the cereal so he gives me less fight but still only agrees to about 6-8 ounces a day so far.  Better than before and slowly working its way up, I guess? He still nurses more than anything but I figure every ounce by thickened bottle is one less ounce he's at risk for getting in his lungs :p  I think he might eventually take all his daytime ounces by bottle but I very much doubt he'll give up morning/night nursing.  Those are the two I stopped even trying to do by bottle because he reacted like Iz used to when we tried to up her calories when she was in heart failure.

We are starting to see signs of spring!  The kids' dad took them all to get rain boots so they could splash in the mud and puddles and stuff and Iz especially is the happiest kid around.  That girl loves mud. 

More bad news....

I'm afraid Friday's swallow study brought bad news--Baby W is aspirating his liquids :(

The SLP working on the study tried him at different thicknesses and nipple flows and found what works for him.  She said he aspirates about thirty swallows in but even a little could be bad if it gets all the way down to his lungs.  He doesn't really even react when it goes in his airways--no coughing or choking.  She wasn't sure if the throat clearing is related (and he's still doing it, even with the thickened milk) but its the "odd" symptom that prompted me to contact his doctor.  My pump and I are becoming good friends (not really, I hate you pump!) and we are working on getting a script for the thickener he needs (the dr's office put in a script for some gel stuff that has a big warning label on the box to NOT use it for infants under twelve months instead of a script for the powder the SLP at the hospital taught me about.  The office was closed when I went to pick up the script so we put the order on hold until I can contact them Monday and see if they will change it).  At the moment, we are using rice cereal and oh my does he need a lot of it.  TEN teaspoons for every four ounces.  His liquids have to be the consistency of honey through a medium flow nipple.

More testing....

Tomorrow we head back to the hospital again for another test for The Baby.  His reflux has returned in full force along with throat clearing.  Every time he eats or drinks, he's clearing his throat the whole time.  Sometimes its just a couple times during a feed, sometimes its every thirty to sixty seconds the whole time.  Dr M is worried he might be having "micro-aspirations" and wants to get a swallow study to rule them out.  This kid LOVES to eat.  He nurses well and is satisfied, he loves baby food now that he's discovered mixed foods (when we were doing single foods he had no interest beyond a bite or two.  Now that he's on to a couple things mixed together he'll down 3-5 ounces before telling me he's full), and he's so active.  Crawling, standing, climbing, dancing.  If he'd just stop spitting his food back up!  Now that he's eating some solids, we are seeing just how long food is staying in his stomach--he was still spitting up dabs of orangish colored milk four hours after he ate sweet potatoes :|