The Weighted Blanket Is Here!!

W's OT ordered a weighted blanket for him two weeks ago and it came in today :)  He's been having such a hard time sleeping lately (which means no good sleep for me, either) and I noticed that when he does sleep, he's stealing my foam pillow (kinda heavy) and putting it on top of himself or he's climbing in my bed and insisting I have my arm pressing down on him.  The OT thinks maybe he's seeking that deep pressure and the weighted blanket might help.  I'm willing to try just about anything to be able to sleep all night!

He took a nap with the blanket and went to bed with it.  He does NOT like it touching his feet but if I arrange it so its only across him from knees to shoulders, he's very relaxed instead of restless.  *fingers crossed* this is a solution to our sleep issues.

After OT we just had one more appointment--a follow up at the pediatrician.  The hives/rash isn't completely clear but it looks much better.  Still no clue what it could be a reaction to.  It is possible it was viral since my other kids are prone to hives from viruses.  Dr M says to continue the zyrtec for at least a week after all the hives/rash has disappeared but if after a month its still there (either the existing hasn't cleared or new spots have popped up and stuck around) come back and we will investigate further.  We have the steroid cream still to use on any bits that get itchy.

GO!

W had speech this morning.  He was very excited Miss H was coming and then when she got here he would barely speak to her.  He was being a stinker (as his Aunt Heidi would say) and do his own thing instead of following the plan.  Miss H tried to get him back on track but when it became quite obvious he would not be deterred, she incorporated the toys he was focused on in her activity (reading a book) and managed to capture some of his interest.  When it was time for her to go, he walked her to the door (as he usually does), gave her her shoes and then waited at the door to say goodbye.  She and I talked for a bit about scheduling and the upcoming school  year and he got inpatient.  He started pushing on her leg and shouting GO! GO!  She was breaking the pattern of departure and he wasn't having it.  Luckily she thought it was funny and praised him for using his words so clearly.

We also ended up having an impromptu pediatrician appointment for W.  He broke out in some hives a few days ago so we did the whole allergy med, baths, itchy cream route and it was getting worse not better.  In fact, while I was on the phone with the nurse discussing if we should come in or wait it out, three more spots popped up on his face.  So she brought us in and Dr. M hadn't seen anything quite like it before.  Because, of course he hasn't.  These are my kids, who love to beat the odds in the wrong direction.  If our family can manage to have something there's little chance of seeing, we do it!  The hives turned rash don't look like any of the common contagious spotty things, doesn't look exactly like an allergic reaction, doesn't exactly look viral.  Best guess is a random reaction to something that overflared or maybe something viral (Iz and the  Super Kid both get the classic welt-type hives 3-5 days before some of the big viruses).  So we are adding a second allergy med to alternate with the one he's already on and he has a steroid cream for the worst parts of the rash.  He's in good spirits and hasn't slowed down at all.

The pharmacy was having a hard time with the scripts (one they didn't even had) so we went off to our next two appointments (we were running late but they knew we were going to be due to W's last minute appointment) and came back later to pick up the script and another branch of the pharmacy for the steroid cream. 

The Big Neurology Appointment

A few months back Baby W's pediatrician referred him over to the same neurologist B and Iz see but her schedule is always so full it was a wait to get a new patient appointment with her.  The main reason he was going to see her is his balance--he will be fine and really coordinated and then he'll go through periods, at least a few times a week, where he falls constantly, walks into things, even falls over while sitting or standing still.  B and Iz were like that as well but they also had moments where they completely blanked out and once those blank moments were identified as absence seizures and they went on medicine, their balance and coordination improved tremendously.

W doesn't have those other symptoms that would suggest seizures.  However, because two siblings suffer from seizures, W is going to do a sleep deprived two hour EEG (and won't it be fun to keep him awake!) just to see if there's anything going on.  For both B and Iz, their short EEGs (20 minutes for them) showed issues immediately and their 24 hour EEGs confirmed that they had active spots 24/7.  The seizure meds calm those spots down and the absence seizures and other symptoms improved.

If the EEG is fine and all of the lab work she ordered for W are fine, it will rule out some possible causes of balance issues.  She thinks, based on his symptoms and the timing of his "episodes" that he may possibly be having pain-free migraine activity.  I suffer from migraines and apparently that puts all the kids at a 50% risk of developing them as well.  Since he has been injuring himself, she is thinking we might want to try a migraine medication and if it stops or greatly reduces his "episodes" that would be a good indication that he having migraine activity.  We'll get through all the testing first before we make any decisions.

The cold weather plus illness has kept us trapped!

Between W's neverending cold and the snowy weather, we have been trapped in the house for what feels like forever!  But when we go the all clear from the pediatrician on Friday, we made a beeline for public activity :p  Too cold for the park but it was a great day for Playland ;)

Feeling frustrated.....

For years, my busy little B has had pretty bad meltdowns, to the point where he would need to be physically restrained and his preschool classroom sometimes had to be cleared out until he calmed down.  The severity of these meltdowns and the suddenness of their ending made his pediatrician wonder if he could be having seizure activity like his sister.  She referred us to neurology and we took him to the same neurologist Iz sees.  The neurologist thought seizure activity could possible explain the meltdowns as well (not positive but possible) and B's EEG showed similar abnormal brain activity like Iz's so B started medication.  His dosage has been raised a few times and the frequency of the meltdowns has changed--they are few and far between now.  He's never had one at school this year so the kinder teacher has never seen what he used to be like.  Now, though, he is on the opposite extreme--he will completely shut down, refuse to participate or talk or move.  Honestly, though, the shut down is a million times better than the meltdown--at least with a shut down I don't have to be worried he will hurt himself or others.

The shut downs don't frustrate me.  When they happen at home, we treat them much as we would a mild meltdown--we leave him alone once we've made sure he doesn't seem to be currently having a seizure and he's okay and that gives him time to collect himself and come back to us.  However, his teacher called me and wanted me to punish him at home for having a shut down at school :-|  THAT frustrates me to no end.  She in insistent that this is all control issue and that he will just not work at school and then I'll let him play all evening and she can't have that.  A control struggle with B looks very very different.  He may refuse to do something, he may even refuse to talk to you while he is refusing to comply, but he never stops moving.  He wiggles, he spins, he wriggles around while sitting down, he looks all over the room.  The hyperactivity part of his ADHD does not stop because he is trying to exert control over a situation.  A shut down, though?  He is still.

I tried to talk to her about what his shut downs at home are like, about his OCD tendencies that can kick in and make him lose it over things that normally are just routine, about his anxieties that flare up without warning.  But she just kept insisting its a control thing and I need to punish him.  I talked it over with B's therapist and she is feeling the same frustration I am!  She has seen B's meltdowns and shutdowns as well as him trying to exert control and yeah, a shut down is not a control move.

At the moment, I'm at a loss on how to get through to this teacher.  I need to figure something out :\

A trip to the pediatrician

When I spoke to neurology about the MRI results, they told me they were sending the report to the pediatrician and to follow-up with her as the next steps would be handled by Izzy's PCP.  So yesterday we set off to see the doctor :p  The nurse gave her stickers while we were waiting so first she hid under the exam table with them:

When she came out of hiding, she wanted to show off her stickers

And then she decorated the diaper bag :p

So, there were a few things on the MRI report.  First, it appears there's some abnormalities with her pineal which I'm told regulates the production of melatonin.  This might explain why she's a poor sleeper :p  But its "normal" enough that there are no recommended treatment plans at this time.

Then there's the Rathke's cleft cyst.  Recommendation is to run an endocrine panel (which her doc already had an order written up and we went for that lab draw after the appointment) and to also, at some point, get an MRI with and without contrast of the pituitary gland. 

There is also some concern about the myelination in her brain and they are asking we do another MRI in one year to check her growth and development and make sure the myelin sheaths are where they are supposed to be.

Now, Iz is not showing any outward signs of a problem with the pituitary gland but we have a pretty good track record of "just in case" checks turning up a problem so we are going to go ahead her endocrine function.  If any of the numbers are off, she will be referred to an endocrinologist and we will set up the MRI of her pituitary gland.  If her numbers are fine, we will wait on the pituitary gland MRI until it can be combined with the one in a year for the myelin.  Unless some problem develops, of course. 

So now we just wait to see what her labwork says!

Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :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.

A case of nerves

B and Iz finally have new patient appointments at the new pediatrician--in nine hours.  I should be asleep.  I have to get up in seven hours and get them ready to go and fed.  Leave the house in eight hours.  Arrive at the office in nine hours.  Fill out paperwork.  Talk.  No big deal, right?  Not much different from what you do at every other doctor's appointment.  And, yet, I am nervous.  Once upon a time, the old pediatrician was fairly thorough with Iz but one of the big reasons we are changing is the fact that after she recovered from her surgery, appointments were rushed affairs and I would be told she was fine and then we would end up spending the next week in the hospital.  The two appointments S has had with the new practice have been very very thorough, which is WONDERFUL, but at the same time, it makes me nervous.  I can't help but be anxious that they will find something with Iz, that our year of peace between cardio visits will come to a crashing halt a few months early, that they will hear a murmur or she will be tachychardic again or something.  Its crazy--I have no reason to suspect anything more than a perfectly ordinary visit for her.  Perhaps it is the fact that we will be back on the Children's Hospital Campus?  *sigh*  This may be a "play Candy Crush until you can't help but fall asleep" night :-/

How much do you want to bet that Iz's portion of the appointment will be perfectly ordinary and short and the majority of the appointment will be spent talking about my busy little B and his quirks?

Moving forward

I am really liking the new pediatric practice :)  They listen to us, they take our concerns seriously, there is no telling us to just wait it out and see if it is outgrown.  I am hoping this level of concern is also there for Iz and B when they go in for their appointments later this month!

The very best thing?  Now that S has had his first meeting with the psychologist, WE HAVE REFERRALS!!!!!!!!  WOO-HOOOOO!  Who knew you could get so excited about medical referrals?  It was such a fight to get nowhere with the old pediatrician and here, they suggested referrals to do right now and another I asked for and they just handed it over :p  Well, they agreed with me that it would be helpful so they didn't just hand it over--it was justified ;-)  And they are doing all the legwork for insurance to figure out how to minimize our out-of-pocket expense (fingers crossed they get it to zero because I may have to stop eating just to pay for all this stuff........kidding kidding.....).

This post is all a jumble, isn't it?  Maybe I should stop writing and go dance with Iz or something :D

New pediatricians!

So we finally snagged an appointment at the pediatrician office we wanted to switch to--only for S at the moment but B and Iz will get in as soon as a new patient appointment opens up.  S and Iz and I drove up there yesterday morning--it is across the street from the Children's Hospital so it is a bit of a drive but I am hopeful that this will be a positive move for us and if so, the drive is worth it :)

We got there early and I was not looking forward to the wait but they took us back early and the wait was not bad at all.  And yet the Doctor apologized for our wait LOL  I can't remember the last time a Doctor apologized for a wait, especially when it was not a bad wait at all :p

She spent a lot of time talking to S, getting to know him, going over the little sheets they have you fill out, looking over the papers I brought from his evaluations when he was diagnosed ADHD and his IEP.  She noticed that his anxiety was mentioned several times and the little checklists we filled out (he had one to fill out, too--I think it is fantastic that they get the kid's input!) scored high for anxiety for him so she talked to him about how he felt and fears and things.  He told both me and her that he wanted to see the "special doctor" who helps people when they are scared.  He and I talk a lot about his anxieties and how to feel better about them but he is so obsessive about the things that worry him that he just returns to them over and over again.  So she referred him to the psychologist so he can get evaluated--she is thinking he may have an obsessive anxiety disorder and that, in her experience, that can often disrupt school and its possible the previous focus on ADHD is going in the wrong direction.  But the psych is the expert in that so we shall see.  At the very least, S will get a little professional help with his worries and anxieties and hopefully that will make a big difference for him!

One of the things I liked the most is the fact that the doc did not bat an eye at the fact that we were unmedicated.  S received OT and behavioral therapy at the school but it is just once a week for a short session.  We have seen improvements but I think he would benefit from more--his old pediatrician stated she just prescribed the meds and every thing else was the school.  This pediatrician says it is no problem to set him up with their OT and behavioral therapy.  No lectures on medications, no pressure to get a script.  I like it :p  Because we are not on medications, she referred us to the psychologist who works with the unmedicated kids--once that evaluation is done, we move forward with the other referrals (the psych also evaluates for ADHD and the doc wants their own ADHD eval instead of just going off the school evaluation).  By the way, I have no problems with medications for ADHD, I just don't think they should be the first step.  Since S has responded positively to a small amount of OT/behavioral therapy, chances are he will respond even better to additional therapies.  If he doesn't, the next step is medications.  But I will be happy if we can avoid them!

I am very hopeful we are moving in the right direction!  Our appointment with the psychologist is late May.  And over the summer, he will turn eight and can start the evaluations for learning difficulties (eight is the minimum age they do evaluations at this office)--hopefully we can find out why he has such trouble seeing/writing letters and numbers the "correct" way so we can help him.  I know it frustrates him to struggle so much with reading and math (his favorite subject). 

IEP, round two

A few days after B's IEP meeting, it was time for S's meeting.  Unfortunately, there were no toys for Iz there but she soon discovered the white board and markers LOL  The OT also had some cards she uses with the kids and let Iz look through those, too, so Iz was reasonably entertained so we could talk.

This year has been up and down.  Sometimes things would go well and sometimes they just weren't :\  Part of it was they had some staff turnover that affected S and things were lost in the transition.  It was frustrating that we had a plan in place to help him but lack of communication between old, new, and transitional staff meant it wasn't always working.  I dunno, perhaps starting off the meeting by stating how frustrated I was may not have been the best but on the plus side, I have seen an effort on several of the staff's part to communicate better and more clearly.

Over the last several months, we have gotten several "hints" that we need to be thinking about medications for S for his ADHD.  No one has come straight out and said it but reading between the lines, the implication is strong.  At this point, I'd rather see them fully carry out his IEP and see if we can get back the results we had at the end of last year!  And after the IEP meeting, I am not at all convinced we are at the point of medications since we didn't even talk about his ADHD affecting his learning and performance in school.  Everything was centered around his sensory processing disorder and his ability to learn.  I would really like to say learning disability but nothing is diagnosed and their evaluation says he does not have one.  However, the OT is at a loss because he should have outgrown seeing/writing letters and numbers backwards but he has not.  And she is in agreement that he doesn't seem to see a difference between a correct letter and a backwards one--put them next to each other and they look the same.  And letters that are similar, such as b and d or p and q all look the same to him so he has a fifty fifty shot of picking the correct one :\ She is working with him on writing them correctly but unless we can find a way to teach him to distinguish between backwards and forwards, he will still struggle to read because sounding out the wrong letter means he doesn't get the words :\  I see many of the same letters/numbers backwards as well but the similar ones look different to me so I can distinguish between them.  I'm not sure how to help him with this and frankly, the staff is at a loss as well.  The head of his IEP team is researching and hoping he can find someone out there who wrote about it and has some tips.  I am hopeful the new pediatrician (if we ever score a new patient appointment--how many hoops does one have to jump through?  And why can't the people who schedule appointments tell me everything I need to do the first time I call instead of giving me one more thing every single time I call :\  I know the office is busy and it is supposed to be one of the best in the area but can't you make your own appointments instead of outsourcing the hospital customer service staff who can't seem to make this easy?  :p) will have some insights and suggestions and give us a referral for services since reading difficulties are one of their "things".  Fingers crossed that when I call again today, all my Ts are crossed and my Is dotted and they give me an appointment LOL

Overall, though, I am pleased with how the meeting went.  We had a nice discussion of things that work with him and I brought up some things we do at home that are successful--those are now part of his IEP and with the improved communication I am seeing, I can see them implementing and having success with it :) 

IEP, round one

The end of the school year is getting close and around here that means IEP time--both boys have their IEP reviews in March.  B was first up and one lovely thing about an IEP meeting at a preschool is the fact that there are toys and books everywhere so there was plenty to keep Izzy occupied while we talked :)

I think one of the more difficult things about putting together a plan for B is the fact that we don't know exactly what we are working with.  His evaluations through Early Intervention and the preschool show there is something going on but those evals don't give a diagnosis.  He has some delays but we need the pediatrician involved to get diagnostic to know exactly what is going on.  Things like high-functioning autism and OCD have been put on the table but without those evaluations, no one knows for sure.  We know that he is speech delayed but has been improving with therapy (although he is still too far behind).  We know that he is incredibly rigid and inflexible and that this interferes with his social development--he has a clear idea in his head how things should go and he does not handle deviations from that.  We know that he has little rituals he MUST do but we don't always understand the rules for those rituals and he seems confused that we don't understand.  Getting the proper evaluations is a fight every step of the way--so far, none of the local pediatricians have seen any cause for concern.  Even the one who thinks he is autistic :\  They want to wait and see if he grows out of these behaviors but the preschool teacher and social worker are in agreement that the sooner he gets specialized help, the better.  A diagnosis gives them a direction to move in.

At this point, my next move is to move him to the pediatricians at the Children's Hospital.  Its a drive but from all that I've read and heard, they can get him the evaluations he needs to find out what is going on with him.  So we are working on that and hopefully he will have a new patient appointment soon!  And maybe, just maybe, I will finally have a pediatrician I can work with instead of constantly fight against :p

Tanglewood Park

One of the best parts of being in Texas was how warm it was!  Between the cold and the wet at home, trips to the park were few and far between so we were determined to do some playing while we had access to warmth and sunshine :)  After a visit with Grandpa, we headed to Tanglewood Park for a little playing.

Iz was quite proud of herself for climbing the steps all by herself:

 

And then it was time to do a little driving:

 

Every time she went near the slide, her hair stood up!

 

This is pretty much the view I had of B the majority of the time--kid was on the go!

 

S was loving that the swings went so high :p

 Iz decided that she was ready for some solo sliding--she was adamant she did NOT need help :p

 

The kids were starting to wind down about this time and we were looking forward to a picnic lunch at the park.  I was also looking forward to calling up a dear friend of mine that I have not seen in person in many years to see if she had time to meet up for a little while.  But before any of that happened, I heard one of those cries that tells you your child is seriously hurting--poor B was climbing the little curved bars that he has done a hundred times before and slipped and fell.  They say head wounds bleed a lot but the amount of blood pouring out of that boy was shocking :\  I was using my hands to apply pressure and slow the bleeding and he alternated between screaming, yelling for help, and begging me to let him go back to playing.  Yep, he wanted to go back to playing.  

We took him to the Dell Children's ER and spent the next several hours there getting him checked out and stapled up.

 

He was still so upset and fought anyone touching his head that they had to give him a sedative to calm him down.  The doctor said most kids do not fall asleep but they get drowsy and calm and it lets them clean the wound and staple it up without having to fight the kid over it.  Wanna guess how many adults it took to hold B down even with the sedative?  Four.  Four full grown strong adults.  Boy did not want those hands anywhere near his head :p  Once it was over, though, he was happy again and they let him keep some of the syringes used for cleaning and sedating (clean ones, not the ones they used on him :p).

 

By the time they were done, though, that shirt and overalls were goners--covered in blood and soaking wet from the cleaning (they tried to wrap him in a towel but he wasn't having it).  Too bad, too, since it was his T-Rex shirt and dump truck overalls, his favorites :(  Once the staples were in, it was safe to lift the shirt over his head and they got him some clean dry clothes to wear out of there.

Poor little buddy just wasn't feeling great the rest of our trip.  We didn't get to do many of the things we planned because he didn't feel up to them.  We visited with family and he napped at the hotel.  Hopefully next time we can visit with my friend and do museums and parks and hikes!

A few days after we got home, B went to his pediatrician to get the staples out and he went back to being himself :)  I've had staples before and they are uncomfortable so it isn't a surprise that he was cranky and mad and not feeling well until they came out!

His experience, however, has not dampened his enthusiasm for parks and playgrounds ;)

15 month well child visit

One year stats

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

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

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!

Another busy week

It seems like many of Baby I's appointments get grouped all in the same week so we are constantly running about and then the next week we just have her weekly weight check and that's it :p This week is only three appointments, though, so that isn't too bad :)

First appointment of the week was this morning at the Children's Hospital in the City to get the next round of Synagis. The wonderful IBCLC we work with now and then suggested we trying nursing through the shot to see if that helped her pain levels so we gave it a shot555 today. It took Baby I a few moments to realize she was getting a shot so it was just about done before she started crying and she cried for less than a minute and then went back to eating. YAY! Much better than last time! I am hoping the nursing helped and it wasn't just a fluke so we can get similar results next month. She was so miserable and upset over the shot last month that it was a relief that she took it so much better this time. Still hard to see her upset and hurting, even if it was to a lesser degree :\

This afternoon brought an emergency trip to the pediatrician's office (so I guess you could say we have four appointments this week?). Baby I had a very slight cough over the weekend, probably the same virus that made her brothers (and me) sick. I had thought she was going to escape it before the little cough started but, alas, no. The little cough turned into a wet congested cough by last night and just continued to get worse over the course of the day. By mid-afternoon, poor little dear would cough, gag, throw up, and then cry :*( So off we went to see Dr. A. Baby I's lungs are clear, her ears are clear, no signs of infection so Dr A. is thinking its just a regular ole cold made a little more miserable by Baby I's reflux plus the underlying congestion she always has from her heart condition. Poor little mite :( Oh, and at the ped's office, she came in at thirteen pounds even. Which is slightly off because she was wearing her onesie today to keep her warm but the ped says that shouldn't throw it off by more than a few ounces and so she should be hitting her one pound mark at the cardio's office :D Now let's hope the coughing-that-leads-to-vomiting doesn't make her lose some of that precious weight and put her back under a pound for last month's weight gain.....

Wednesday is cardio and we get our next echo to see how her holes and artery are doing.

Friday is one of her home nurses coming to visit.

I have many things I should be doing but I think I might sleep instead :p