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  I was already planning on ignoring her since much of her advice was outdated but GI was also adamant that we ignore her--keep the whole milk and butter, avoid migraine triggers, and keep that boy growing :p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

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?

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.

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 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.

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

We had a good appointment

Iz's heart is sounding good--no murmurs or odd sounds.  Her blood pressure was excellent, best I've ever seen it--I think I may have slightly confused the nurse, though :p  They typically start taking blood pressures at three years old but I asked her to take Iz's bp as well and she froze for a moment LOL  I reminded her that Iz is a heart baby and blood pressure is important for her.  She thought Iz would scream and cry but nope, she's an expert at this stuff and held quite still and got her numbers on the first try.  She has also gained a bit more weight and is in at 26 pounds now and a little over 33 inches tall.

We do have a referral to go see orthopedics next month--I brought up my concerns about Iz's toe-walking and was told that it can be quite normal and they don't start worrying unless the problem persists after age three.  But the attending physician came to take a look at her and noticed she limps very slightly when she walks so he wants orthopedics to rule out a problem with ligaments or leg lengths.  So off we go next month (first available appointment) to have her checked out, just to be sure.

My busy little B is almost 34 and a half pounds and forty inches tall :)  He was very cooperative getting his weight and height and blood pressure and doing his vision screening.  He kept charming the nurses ;-)  They were very thorough going over our concerns and the concerns of his preschool teacher.  He is being referred to the Autism Center for an evaluation.  The social worker is tracking down which center is closest that takes our insurance so I should be hearing back from her in the next few days so I can set up the appointment.

One year stats

3 month post-op cardiologist visit

Iz was mostly cooperative during her EKG but she let it be known that she did NOT like the Echo. She does not like her scar to be touched by anyone but me and occasionally Daddy and even then, its only when she asks for it to be touched (she loves to be massaged and asks for it daily). Poor little mite looked so betrayed when we let Dr E continue to press the wand on her scar :/

It was a great appointment, though! Her blood pressure was really great, 94/60. She was 29.5 inches and 19 lbs 13 oz--gains in length and weight :) Last appointment back in May two weeks after surgery she was 29 in and 14 lbs 4 oz so Dr E was quite pleased with her growth.

The echo shows that her right pulmonary artery is still half the size of the left one. But it does not affect her at all so as long as it doesn't start restricting further, we should be fine. Dr E said that even if it does start restricting, the left will pick up the slack and we wouldn't see any outward signs and it would have to be picked up on echo. Fingers crossed that it just hangs out as is and never needs intervention :p

There are no leaks around her patch and he can see where her heart tissue is growing over and across it--he said eventually it would be completely surrounded by her heart. Reminds me of a tree we saw one day when we took the kids to the natural history museum; it was growing around and over a sign pegged to it. Won't be too long before the sign is completely enclosed by the tree.

The best news of all was that her heart is back to normal size :) We were warned that the enlargement would persist for months, maybe even a year, so I was hopeful that it would have gone done some but was not expecting to hear it went all the way :)

We have been cleared for yearly visits. One hand, that is fantastic! On the other hand, eek, I have to wait an entire year to be reassured that nothing has gone wrong? OY.

Good Things

**B had his followup with the ENT and his ears are working better :) He still can't pass all the hearing tests but there was enough improvement that we didn't need to do the sedated test :) He will continue to take his medicine for a month and then be off it for two. If his ears stay clear, they will just monitor. If the fluid returns, we may still need tubes
**Iz has gone from a couple reflux episodes per hour to a couple per week :) We are all very pleased!
**Iz hit 19.8 on the home scale today--I know it isn't as accurate as the baby scale but it shows a gain in the right direction
**S also gained about six pounds--he is our stays boney no matter what and how much he eats so we like seeing gains :p Boy never stops moving
**Iz outgrew all her jammies :) Yay, growth!

9 Month Well Child Check

I was so dreading this visit :p I dread all dr's visits now--always expecting bad news..... But things were fine. Iz is up to 17 pounds 1.4 ounces, she has hit all the milestones the ped was looking for, her lungs and heart sound good and there is still no murmur (yay!) so the ped thinks that there is no leakage around the patch :) Or at least if there is, it is minor enough not to sound like anything ;)

While we were there, she also checked out my Busy Little B's ears, again. He has not been able to pass the hearing test through Early Intervention and they have tried once a month for a while now. At first we thought it may have been due to the ear infection he had the month before his first hearing test but the next month, he still failed. Last month I took him to the ped, she checked him out and made sure his ears were all clear and EI did the hearing test again. Failed. So the ped is referring him to the Children's Hospital to get a more in-depth hearing test.

I have mixed feelings about this. Not that I don't want him to get his hearing checked--I do! If there is a problem, I want to know so we can treat it (and if there isn't, I also want to know so I don't have to worry about it). But going to the Children's Hospital makes me nervous, anxious, a little scared. Its completely irrational, I know. After all, they gave Iz back her quality of life. They fixed her. She is doing so great and is happy and growing and awesome. But the CH is also filled with tears and fear and panic and very dark moments. At the moment, the dark places are winning. Keep reminding me of all the good there is, too, so when it comes time to take B I won't be a basket case ;0)

I should have charged the laptop earlier--I have some nice photos of the kids from our walk today that I would like to post. Perhaps I will have time tomorrow if I can convince the kidlets to both nap at the same time (which happens almost never). Last day of school for S! Summertime has arrived :D

So much to be proud of.....

The past couple of days, my little kidlets have given me so much to be proud of :)

I think Iz's accomplishments go without saying ;) Catching up physically, always trying new things, being so excited to learn new skills, learning how to wave and say "bye-bye", having opinions about things, growing and growing and growing :)

B had an awesome day on Wednesday--I mentioned last post that we toured his preschool for next fall :) We got to meet his teacher and spend some time in the classroom and meet some of the students who will return next fall (and some who are graduating and moving on to kinder). He was very very shy at first but he wanted to participate so bad :) Since PT was evaluating Iz, I was free to hold his hand and walk with him as he tried out the obstacle course in the gym with the other students. He had fun and soon forgot that he needed me and did it all on his own ;) One thing he has struggled with during playgroup is circle time--he doesn't want to sit, doesn't want to participate, he just wants to do his own thing. He did awesome at preschool! He insisted on sitting next to me but he did sit and he sort of participated when he thought no one was looking ;) He tried to get up once or twice when other students did but for the most part he did great. I can't wait to see how he responds to speech therapy next year while he is at preschool :)

S has been having a great few months--ever since his IEP was put in place, he has been on green every day, he is getting assignments and homework done, he reads so much better, and his academic progress is better and better. He had a field trip to the zoo yesterday and my cousin took him--the last time she took him to the zoo, they had to leave early because he was throwing tantrums and not listening. Yesterday, they had a great day--he listened, he obeyed, he had fun :) The "sensory diet" the occupational therapist recommended really makes a big difference in his ability to calm himself.

We have our rough patches but overall, life is grand :)

8 months old

Iz turned 8 months old on Wednesday and had her two week discharge/three weeks after surgery checkup on Thursday. 15 lbs 2 oz! Finally doubled her birthweight!

Surgery Consult, pt I

Thursday was Baby I's surgery consult. Normally, we go to the Children's Hospital in the mornings for her Synagis so there is no problem with parking. Her surgery consult, however, was in the afternoon and we just kept going up and up and up and up in the parking garage. The fourteenth floor was the top and we finally found a parking spot. I was out of the car helping guide him in and he finally gets the van parked......and he can't open his door because of a cement column LOL So out he pulls and manages to turn the van around (very very narrow lanes and parking spots) and pull in the other way so he can get out.

We head inside and go to registration and sign in. And wait. And wait. And wait. No one is there, we are the only ones on the list, no one seems to know where the registration people are or where to find them and we just "need to be patient." Good thing I am a stickler for being early whenever we have an appointment at the Hospital. The registration lady finally comes back and tells us we don't need to register (despite the instructions telling us to register when we got the confirmation message) but actually just need to grab a pass from the front desk (that no one ever asks for or looks at so what was the point?).

Up to Pediatric Cardiovascular Surgery we go where the check us in and send us over to the Cardiology department. Where we wait. And wait. And wait. They let us know they are running late but the surgeon we are meeting with after the echo got pulled into surgery today so he is late, too, so no big deal, I guess :p Baby I had fun watching people :)

They get a weight check on her and she has eked out a few more ounces! Yay! Up to thirteen five :D She puts on a tiny tiny hospital gown--I didn't even know they made them that small. It was so cute but my husband refused to take a picture of her in it. He says he doesn't want reminders of this time. I think that some day, she may want to know about the scar on her chest and she might want to know these little details and pictures. And a picture of her smiling and looking cute in a little yellow gown isn't so bad :) I took a few with my phone but she was having such an active day they are a bit blurry and some have parts of her head cut off because she was bouncing around :p If I think about it, I'll edit once I am on my computer and upload the best of them here :)

So now its time to do some more waiting in the back hallway of the cardiology department until an echo room opens up. It seemed to take forever but that may have just been because the chairs were really uncomfortable and Baby I decided she needed to nurse RIGHT NOW. Nothing like nursing thirteen pounds of wiggle worm on an uncomfortable chair ;)

We finally make it into an echo room. At first, Baby I reacts as she does to all of her echoes--she is happy and smiley and there is a little leg kicking and some grabbing of the wand and attempts to chew on the tech's fingers. And then she decides she has had enough and oh, the crying and the squirming and the tiny impotent fury. The next hour saw us trying everything we could think of to keep her calm and still long enough for the tech to get a few pics--cooling her down with damp cloths, playing a musical/lighted toy, letting her chomp on my finger, holding her. patting her, stopping to nurse, stopping to cuddle, breaking out the toy again, trying a cartoon on the tv, singing to her, etc etc. Fun times. Eventually, between the tech and one of the cardiologists, they got what they needed and we headed back to the surgery department.

To be continued......

Six Months Old

Baby I turned six months old on Friday and on Monday, she had her six month well baby visit. She really loves her pediatrician--she always gives her big smiles and starts bouncing around on my lap when Dr A comes in :)

Dr A says she is looking good, although she is the size of an average three month old. She gained a tiny bit of weight since her Synagis appointment last week--up to 13 lb 2.6 oz. And she added a little length as well--25 and 3\4 inches.

Her Zantac isn't working very well lately so Dr A upped her dosage to 2ml every twelve hours. Last night was a bit better so here's hoping the new dose kicks in soon and she is back to feeling a lot better. There has been far too much crying lately :( She seems fairly happy and content at the moment and this is the longest I've been able to set her down in days so I am a little bit hopeful. And I really should go do some laundry or something while I have a few moments LOL

Synagis, the Last

Yesterday was Baby I's final Synagis shot--again, we nursed through the shot and she did very well :)  She didn't even realize she was getting it until it was almost done and she cried for about thirty seconds this time before returning to nursing and settling back down (the nurse administering the shot was amazed at how little she cried since all the babies scream over that shot).  Of course, shots of any type mean extra sleeping:

She was insistent that any sleeping HAD to be done right next to me so I spent a lot of time reading in bed while she napped :p  No bassinet or bouncy chair for her!

The good news is that she managed to eke out just a little bit more weight and broke the thirteen pound mark :D  Granted, she was 13 lb 0.6 ounces but it was still above thirteen ;)


I was feeling a little irritated today--I refilled Baby I's heart meds at the pharmacy because she is almost out.  Being such a little thing, she is on very low doses of Lasix and Aldactone and not only does the literature for these drugs have warnings but the pharmacist and the cardiologist and the pediatrician have all mentioned how very important it is to give exact doses.  Too little and it won't work and her heart and lungs will struggle too much.  Too much and Very Bad Things can happen.  So I need medicine droppers that can measure out very small amounts--you cannot buy ones over the counter that handle those amounts so precisely.  I have to rely on the pharmacy to provide me with syringes with the needles removed to dispense the meds.  They know I can't get them.  They know I need them.  They know I can't buy over the counter dispensers and "guesstimate" the dosages.  And yet, every single time, I have to fight for these syringes.  Every time.  ARGH.  And it isn't as though I am asking for a new syringe for every dose--I need new syringes about every two weeks because the numbers wear off and I can no longer see the lines to get correct dosages.  I make them last as long as I can.  And I only ask for three at the most (she is also and Zantac but I do not have to be as precise with that dosage so I can use over the counter droppers but prefer not to because they are too big for Baby I's mouth and she is a terror to give Zantac to :p  Smaller droppers are easier to get down).  So I am irritated once again that it was suggested I buy an over-the-counter dropper and that I once again had to point out that you cannot "guesstimate" with heart meds for a tiny baby.  *sigh*  Rant over.  I think ;)

Tomorrow B has his first speech therapy playgroup--fingers crossed that he doesn't spend the entire time hiding behind my legs!

Yer going the wrong way!

Last week's weight: 12 lbs 15.4 oz

This week: 12 lbs 14.2 oz

Notes on Baby I:

**We had our weekly weight check today and we have a small gain :) Last week was 12.11.8 and today was 12.15.4 :) So close to 13!
**Teething is kicking our butts. Baby I has been so unhappy, crying and trying to pull her ear off on the left side. The nurse who does her weight checks called the dr in to take a quick look at her ears, just to make sure they were ok. They look good so its just teething. Part of me sorta wishes she did have an ear infection because then she could have some meds to clear it up (like her brothers just went through) and she would feel better. Ah, well, maybe we will finally see that tooth pop through *fingers crossed*
**Baby I's breathing has not been very good. She sounds incredibly congested although there is nothing stopping up her nose--its just the fluid buildup from her heart and lungs. Poor little girl :( However, she has never turned blue that we have seen and she only turns dusky rose when she eats for too long or gets too worked up playing. It could be worse, right?
**She has been sleeping a lot more--she slept most of the day. However, when she is up, she is much more alert and active than she has been. I guess a few periods of alert baby are better than many periods of listless baby :)
**She has been able to eat for longer periods before getting too tired :) Still not as long as she used to eat but better than it was a few days ago.

Baby I has also received a few presents in the mail and I need to get some thank yous going for those :D It really does brighten my day to see how much love there is for her out there!

No weight gain this week.....

Again.  Last week on Monday morning, she was 12 lbs 9 oz at Synagis Clinic.  At her ped's that afternoon, she was 13 lbs even (??).  On Wednesday at cardiology, she was 12 lbs 10 oz.  Friday at the ped's, she was 12 lbs 15.2 oz and today at the ped's, she was 12 lbs 11.8 oz.  So according to some measurements she gained while according to others she lost.  So we are calling it a wash  :p  Nursing has been a struggle for her the last few weeks--it just makes her too tired and she has to rest often during a feed.  And when she does get the energy for a full nursing session, her reflux kicks in and she spits up large amounts of it *sigh* 

Poor Baby I slept most of the day today but she did have some fun this evening playing with Auntie H :)