ST

Baby W started speech therapy today and I was very pleased with how well he did.  He tends to be shy and stick to me around new people but after a few minutes, he left me and approached the SLP and interacted with her.  He liked her and while he ran back to me for reassurance often, he also went to her and participated and even tried to imitate her sounds :)

Its so strange to me that he has no "real" speech.  He says mama, da, hi, and byebye but by this age my older three had sentences and big vocabularies.  Of course, those three also had speech regressions around 18 months and all had to be in speech (two oldest are still in speech--Iz was put in speech much earlier than they were and caught up quickly). 

Again!

Iz and I taught Baby W how to throw a ball today.  Iz thought this was terrific because it is great fun to play catch!  Except Baby W doesn't want to stop now LOL  He is throwing whatever he can pick up at us so we can catch it.  Before, he just sort of limply dropped things to get us to pick them back up again but now that he's figured out how to get some distance, he's really going for it.  Pretty good aim, too HA!

Wait, what day is it?

Last night, I kept having the feeling I was so far behind for the weekend.  Saturday is usually my day for laundry so that by Sunday night it is all folded and put away, ready for the school week ahead.  Yesterday we were on the go a good part of the day and I did no laundry until bedtime.  So I'm thinking, where did my weekend go?  Tomorrow is Sunday and I still have to do ALL the washing and all the folding because I didn't get to it today! Since when are my Saturday's so darn full?

Oh, wait.  There was no school today LOL  IT WAS FRIDAY.  ha!  Carry on, life, carry on.

Throwing the schedule back into chaos

Now that we've had time to settle into the new school schedules and school routines, it was about time to throw some more wrenches in the fire (I know, mixed metaphor.  Just call me Rebel)!  We had a brief break from some of our therapies while we figured out bus schedules and activities and such but my calendar is once again full of appointments and things and we are back to on the go far too much of the time.  Ah, well, it was a nice little break from the hecticness :)  Far better for my schedule to be hectic than for them to not get their therapies at all

Week Two of one kid in the morning

It is so quiet here in the mornings with only Baby W in the house.  I had grand plans to be productive while I had a quiet house but on the first day of Week Two, Baby W and I took a nap :p  So  much for productive!

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.

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.

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.

I think spring is confused

No-coat weather, snow, rain, frost, warm, sunshine, wind.  Mother Nature can't make up her mind!  We never know if we need coats or shorts lately :p

It is gloriously sunny today and Iz was so looking forward to playing outside....until she stepped out and realized how cold the wind is.  She opted to stay inside LOL

In some ways Baby W has been a little bit behind my other kids.  He crawled a little bit later, he learned the pincer grasp a little bit later.  But man, when he makes up his mind to master something, he does it quick!  He's already figured out climbing and pulling himself up to stand.  My others were closer to a year when they started with those skills :p  He had a dr appointment to day and even the nurse commented on how incredibly active he was.  Kid has been sick for a week and not feeling all that great but he hasn't let it slow him down--he's still all over the place

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 :|

The consensus amongst Izzy's medical and therapy team seems to be she needs to be in preschool, preferable the sped preschool through the early childhood program.  Now to just get the school on board with that........

Big Changes Ahead

My Busy Little B has some big changes ahead!  He is currently  in the first grade and has never been in a typical classroom.  He did two years of sped preschool and a year of sped kindergarten and this year for first grade he was in a small behavioral classroom (new state means different classification--in our old state everything went through sped).  But he has done so fantastic this year that he is ready to try transitioning to a regular classroom :)  We had the transition meeting tonight for him to start his day at our local elementary. He'll go for an hour and then return to his normal school and classroom.  As he adjusts to the hour, they'll add a second hour.  They will follow his cues so the transition to full day could happen swiftly or over the course of years.  I like the idea of not having a set schedule to transition and taking it slow based on his needs and comfort level :)  They have to set up transportation between the two schools for after his hour and then he'll start, probably next week.

Lots of testing :/

So our littlest guy has been struggling to gain weight--he has pretty bad reflux and was constantly spitting up.  We tried a couple different meds and prilosec seems to work ok.  He still spits up but not nearly as much and he has started gaining again but ssssllllloooooowwwwwwlllllllllyyyyyyy.  Because the older kids all have "stuff" going on, our current pediatrician ordered a bunch of tests to see if there are any of the "common" genetic causes going on, including the oh-so-fun sweat test (three and a half hours in the hospital for that one.  He was cooperative but his sweat glands were not so we had to do the test twice on one arm. Fun times).  So far, nothing much has turned up.  He has a few slightly off results on the blood work but not so far out of range they are really worried.  He has been voracious in his appetite lately, both for nursing and actual food so perhaps by his next appointment his weight will have caught up on its own :p

Muddy days are the best!

Developmental Pediatrician

Iz met with the developmental pediatrician for the first time.  He says her intelligence testing shows she's one smart little girl but her current abilities are way low and he thinks it all comes down to the anxiety she developed after surgery.  He asked permission to talk to the school and try to get them to make a medical exemption to bump her up on the wait list and get a spot for preschool and see if regular classroom experience can help her get past the anxiety (unlike her EI group where she made not a sound for over two years....) and if she still can't participate, he's recommending we try a very low level anxiety med.  He's in agreement with the neuropsych that its selective mutism but while therapy alone has helped improve things, its not enough.  He talked about maybe getting her into some other services as well--currently she's in OT to work on motor skills and sensory issues and she meets with a therapist every few weeks.  He mentioned maybe some PT for the low muscle tone and maybe speech.  Guess we'll see what happens?

Things are calm

I tend to update a lot when things are scary because the very act of writing about it tends to help me get centered and prepared for the fight ahead so when things are calm, I tend to drift away.  Doesn't seem quite right, does it?  When my kids look back on these pages someday, they're going to want to know where all the happy times are instead of just the bad.  I suppose if I make a resolution to start updating regularly with the good things, there's a high probability I shall fail and still continue to just wander by randomly :\  Hey, at least I'm honest, I guess?

OK, update:

• Izzy has graduated to cardio visits every two years--she is stable and doing great
• we had another baby!  Little W joined us in June.  He had a heart murmur at birth but by the time we got our appointment with cardiology, there was no murmur but he does have some turbulence in one of the pulmonary arteries because it makes a sharp turn but he should outgrow that--as the artery widens and the curve gentles, the turbulence will abate.  His echo looked fantastic
• We moved!  Several states away and while it was scary to leave all we knew behind and have to start over with a new medical and school team, it has been a FANTASTIC decision.  Don't get me wrong, we had an awesome medical team back in our last home but it still felt like we had to fight for a lot of things.  In our new state?  Its so easy to get referrals, insurance covers things our last state didn't, and nothing has been a fight.  I go in prepared to do battle and instead they are suggesting referrals I never even thought of.  The school is the same way!  I had to fight every step of the way before and the new school wants to help and added to their services at their suggestion.  No fighting necessary.  Awesome :)
• We got a dog, a german shepherd named Mia.  She was an owner surrender and her somewhat neurotic behavior at times makes me wonder if they didn't always treat her the best but she's smart and eager to please and wedged herself firmly into our hearts and family.   When the warm weather returns, we will again get to enjoy long walks in the fantastic hike n bike trails here with her.