Look Who Got Glasses!

He only needs them for reading and other close up work but he was pretty excited to get them

(sort of) Sports Related Injury

Tuesday night the kids were all at Kung Fu and I was trying to get all the pre- Christmas everything finished in that brief no kid 90 minutes when in they walked 25 minutes early.  

I yelled down the stairs "why are you here already" 

X said with great emotion (not sure what emotion exactly- it was kind of a mix of awe, excitement, worry and pride)  

"A broke his foot at Kung Fu"  

I come down to see B helping A into the house and everyone was telling me all about the blood on the training room floor and things cracking and everything- 

all at the same time.  

So I assumed that it  happened DURING A's class- 

well you know what happens when you assume...

Fast forward to the next day when I am talking to a mom whose kids are in class with D and X and she reveals the injury didn't happen in class but while the big kids were messing around waiting for their class to start.

 We told A just to tell folks it happened at Kung Fu and leave the specifics out.

But either way- he now has a broken toe and since the break is near a growth plate (in his toe- who knew?) he has to see an orthopedic surgeon next week and since it was an open wound on the less than sterile training room floor he is on an antibiotic that is, and I quote, "the nastiest thing ever"

It isn't slowing him down and he got a free pass for not doing his homework on Tuesday night.

Why Tag is a Game Best Played on Grass

and not cement....



Got the call from the school nurse that A suffered a tag related injury. Now the 5th grade rule is tag is to be played only in the grass and that tagging is to be done with only one hand. Luckily so far it seems to be superficial damage only (although his sweet wonderful teacher Miss C checked him all day for a concussion)

So the Doctor....

looked at D's hands and said...

Sometimes this happens with kids. It could be anything but as long as it doesn't get worse, to not worry about it at this point. And judging by the responses I have gotten here and on some of my online forums, sounds like there isn't a consensus on the cause. It will be interesting to see if it gets better this summer when she isn't at day care/preschool.

Paging Dr Mom

So she has an appointment on Monday morning but D has been having intermittent redness on the backs of her hands. We had weeks ago and I gave her some lotion and then it was gone. Now every day when I pick her up at day care it looks like she has gloves on. The redness goes from her fingers to her wrist. She says it doesn't really hurt (although she acts like it does in the bathtub- but not when you touch it) In the morning the redness is gone (regardless of whether I give her lotion, or anything before bed) Both schools she attends have not changed soap or anything. One nurse thought it was dermatitis, the other one thought maybe really chapped hands from not drying well and going out in the cold. Right now there is no redness but her skin feels very scaly and rough and leathery. There are no other places ANYWHERE else on her- and it is both hands, but not the fingers or the palms. I tried to do the Google thing but thought who is better for medical advice than random people on the internet.
Thoughts?

What is All Over the Carpet (or Are Your Feet Bleeding?)

Yes, that was the big question in our house last weekend. We were finishing up dinner and I noticed a small red spot on the floor (but from where I sat it looked like ketchup- and since ketchup is a major food group at our house, I didn't think much about it) I figured I'd wipe it up when I wiped up the table. B and I sat in the kitchen trying to decide where to go on vacation this summer and the kids all played some kind of tag upstairs (on an aside note- we really have to move someplace where the winter cold means 50 degrees or above)

I go upstairs and realize there little red "ketchup" spots on every step, up and down the hallway, in every bedroom and the playroom. So I stop the game of tag and say "who's feet are bleeding?" and they all say "not me" (that darn "not me" causes all kinds of trouble).
They also all look at me like I have lost my mind until I start checking feet and sure enough, A has a cut on the bottom of his foot that is continuing to bleed. We have no idea what he did, he has no idea what he did or when it happened.
He has a large band-aid.
I have clean carpets.
So apparently it was sort of a win win.

Hopefully That's It (For a While At Least)

After getting up at o'dark thirty 4:45 am, we arrived at the hospital and D was surprisingly in a chipper mood- she was all smiles for the most part. She mentioned the surprise but seemed willing to wait for it.

Not happy enough to pose for photos though

Our biggest concern was dealing with her anxiety. She is what they refer to as a "frequent flyer" meaning she has enough experience with surgery to know what is coming next. In many areas of life, experience makes a person calm and more confident- but when it comes to surgery that rule often doesn't apply and D is no exception. We were very concerned about the process of putting her under, especially after knowing how much better things went at the other hospital when we were allowed to stay with her.

We met with the anesthesiologist, who was thankfully (although reluctantly) willing to let one of us go back to the OR with her but she had also planned to give her a dose of Versed as well. I would have been okay with them taking her alone if she was happy and loopy on the meds but as a frequent flyer she KNEW what that med tasted like and there was NO way she was going to swallow it- and of course she didn't. However, she was surprisingly calm (although not always cooperative) and having B go back with her was a HUGE difference.

The surgery took about an hour and her surgeon is pretty happy with how it looks so far. She is on a liquid diet today and a soft diet for a week- which so far she is open to (although how hard is it to convince a child that ice cream for dinner and popsicles whenever you want them is a good thing) She is off school for a week so that there is little chance of getting hit in the mouth- Of course she is running around here as if nothing has happened so we will see if keeping her home is really a safer option or not.

Awake, eating popsicles and watching TV with her new surprise sitting next to her- a new Hello Kitty lunchbox complete with some small toys, a necklace and jewelry.

We go back in a couple of weeks to meet with the surgeon and if everything looks good and heals up we are (hopefully) done until her bone graft in a few years.

However, despite all this good news she has had a couple of issues today telling me she can't have Christmas pictures or go to school cause "I no pretty anymore" I am so sad for her that she has already internalized that some people might not think she is pretty. However, she seemed very reassured that she will heal and that Christmas will still happen- so hopefully we can work on understanding that beauty isn't only about how you look on the outside.

Sigh, it starts so early.......

VPI Follow Up Last Week, Surgery Tomorrow

Last week D had her follow up at with her VPI team to check how well her p-flap has healed and how well it is doing it's job. We bribed prepared her with the promise of special lunch with mommy and daddy and a trip to Target to get the accessories for her new room. She was very excited until we pulled up in front of the building. We were eventually able to get her out of the car and into the hospital. Bottom line is the speech therapist was fairly impressed with the improvement in her speech. There is a small hole that potentially could cause an air leak which will interfere with her correct speech but at this point it is so small they want to wait to see if it closes itself as she grows and gains weight. If not, we will go back when in a year or two (or three- whenever she is discharged from speech therapy) and decide what to do then. She was just happy to not have to do the "nose camera"

Watching herself on TV as they took video of her repeating sentences. This is the "nose camera" room- so initially she didn't really trust us that all she had to do was talk into the microphone.

Tomorrow we go to see her plastic surgeon for a lip revision. Right now she seems more interested in the "surprise" I am motivating bribing her with but I imagine tomorrow at 5:30 when we pull up to the hospital not even promising her a pony will help. It should be an outpatient surgery and if everything goes well we should be home with her around lunchtime.

Think good thoughts for her (and us)

click here for an update on how the surgery went

She Survived the Dentist

Apparently we hadn't made it clear enough to D that the dentist was going to fix her teeth not at his office but at Really Good Children's Hospital. We pulled up out front and she took one look out the window and said.....

"This NOT the dentist. I no going!!!!"

Fortunately, she did finally decide to get out of the car and go willingly (and by willingly I mean being carried and crying at the top of her lungs)

We got there at 7 and by 7:46 she was under anesthesia. Much faster than normal surgery (also they allowed us to stay with her while they started- which is another big improvement over the main surgery unit at the hospital)

It took about 3 hours to get all the work done and the dentist wants to work with her to desensitize her to dental procedures (since he suspects a big problem with her toothbrushing issues are a result of trauma related to multiple cleft procedures)

But for now her teeth are all healthy and after a meal of Tim Horton's strawberry Timbits (yeah I know dentist, Timbits, marvel at the irony) she is pretty much back to normal- whatever that means.

The Saga Ends at the Dentist Tomorrow

This is kind of long, so grab a cup of coffee and get comfortable

Back in June, the kids had their 6 month dental appointment and the dentist comes out and announces that D needs at least 4 crowns on her back molars. This is not necessarily a huge surprise since

1. Who know what her prenatal nutrition was like

2. Who knows what her nutrition/tooth care was like the first 14 months of her life

3. She has a cleft palate which means that some teeth are not fully developed and we aren't sure if those issue might also effect some of the other teeth)

4. Brushing her teeth is akin to torturing her. If involves large amounts of screaming and trying to hold onto her (all while worrying that this is going to cause some trauma related attachment difficulty) And although she has gotten a lot better about it the first years were a battle and the back teeth are the hardest to reach.

Anyway-

The dentist tries to get an x-ray to make sure the top teeth are not a mess too but her mouth is actually too small for her to hold the x-ray film. The dentist decides that she will just take the x-ray while they are doing the initial 4 teeth since she will be under anesthetic (so they can get the film in without hurting her). The dentist has a anesthesiologist who comes to the office and they do it there.

However,

since she has massive doctor/surgery fears AND has had minor complications waking up AND has a p-flap (which means that if they need to do a tube for any reason the doctor has to KNOW what he is doing) I decide to call the doctor directly and ask what he thinks.

I get him on the phone and he says "Well my partner handles the cases in that (my dentist's) office and he really can't do a case like that. I could do it, but they will have to schedule it directly with me. But if it were my kid, based on what you have said, I would do it at Really Good Children's Hospital since that is where they know her history."

I call the dentist and let her know we are going to do it at the hospital. I call the dental clinic and tell them I need to schedule dental work that needs done under anesthesia. They tell me that they "don't do that" unless the child is seen in their dental clinic first. I tell her "fine, schedule it" She says "Our next appointment is in March" I say "Are you kidding me? That's 10 months from now?" I hang up and call the dentist and tell her to schedule the procedure with the other guy.

Meanwhile, the more B and I think about this the less comfortable we are with the procedure being done in the office (for all the above listed reasons) In fact, one thing that was stressed to us during the p-flap surgery is to make sure that anytime she has anesthesia they know she has a p-flap. And in all honesty- she doesn't need another reason to be afraid of the dentist. So we know we have to deal with the hospital but aren't sure how she can make it almost a year with her teeth hurting.

Luckily, I was on the phone (for an unrelated reason) with the cleft coordinator at Really Good Children's Hospital and I asked her what she would do. She said she had some connections to the dental clinic and maybe she could get some names of local dentists who have OR privileges at the hospital. About an hour later I had the names of a couple of dentists. I called one and they were willing to see D (which also meant a second opinion about what work needed done) and tomorrow finally she is having the teeth all fixed- (which is great since she has been on a steady diet of Tylenol for the last week or so since her teeth hurt)

If you are still with us- thanks for reading and any good thoughts you can send to DW would be appreciated.

And while you are thinking good thoughts, I am dreading what this is going to cost us since my dental insurance will not cover any of the hospital facility charges beyond the anesthesiologist (even though it is done in the dental clinic at the hospital) and my medical insurance won't touch it at all since it is dental work (even though the reason it needs done in a hospital is medical).

Hopefully, it will be reasonable, otherwise D might be getting crowns for Christmas and I have no idea how to wrap them......

They Are Eye Drops, Not Hot Pokers

So it is time for A and D to have their annual eye exam (okay technically 6 months ago was time for their annual eye exam) However, I was dragging my feet cause I seriously do not like the office staff at the office. But the other day my eye doctor hired a new doc who sees kids so we have transferred the kids to her. Everything is going great during the appointment, D is making A go first to prove nothing is bad/painful/traumatic and that was working well until it was time to do the drops for eye dilation....

The doc gets the drops out and I shoot A the look that says "cowboy up- your sister is watching" However, either he doesn't get the message, or is inner drama queen took over and he yells "ow it burns" as she puts the drops in. D starts to cry and here is how the rest of the appointment went

Me: Tell your sister it's not that bad

A: But it really burns

D: crying

Doc: Okay change- it's your turn D

D: I want Mommy to go with me

Me: (with a strong sense of foreboding) Okay (now she is sitting on my lap in the chair)

Doc: Okay D what do you see? (picture of a truck)

D: (crickets chirping, no response- she is sitting motionless as if she believes maybe the doctor won't see her if she sits still)

Doc: (changes picture) How about now? What do you see? (I should note that it is now a picture of a horse- one of her two favorite animals)

D: I don't want drops, no drops, no drops (coupled with this heart wrenching, forlorn cry of despair which is now starting to approach hysteria)

Doc: (understanding her defeat is eminent) Okay no drops, we won't do any drops. We'll do them another time when you are bigger

D: (stopping the tears) When I bigger I get drops. It's a horsie

And with that we were back on track for a nice easy appointment (or as easy as it can be with a 10 year old with Asperger's and dilated pupils, a dramatic and doctor phobic 4 year old and a crabby exercising my vocal cords by screaming for no reason 2 year old)

My doctor's office may go back to not seeing kids

Back at Home

We were sprung from the joint at about 2 this afternoon. So far she is much closer to being back to normal (whatever normal is) and just had Chinese food for dinner. As they wheeled us to the car she declared "I don't like this hospital- I like the other hospital" Apparently she has forgotten that on Tuesday she hated that hospital too. However, I think after this we are going to need a team of people and a horse tranquilizer to get her out of the car for her next surgery this year.

It has changed how her speech sounds- now she sounds less "nasal-y" but sounds more congested. It is almost like her speech is muffled and her words are much less clearly articulated- she almost sounds like a drunk with a cold. Hopefully it is due to the swelling and the tightness of the new flap- because of now- she is actually harder to understand at this point. The doc wants to wait 3 weeks to give everything a chance to heal before starting speech back up. Hopefully, the worsening of her speech is only temporary until things heal and speech starts back up.

4.5 Ounces

every 4 hours- that's what D needs to eat/drink in order to get out of here. Unfortunately she is expressing her displeasure about being here through non-violent protest and a hunger strike. Last night she had a plan "sleep eat go home" Unfortunately, being forced to take her medicine has re-ignited her desire to not do anything they want her to do. Someday this stubbornness will be valuable- however, that day is not today. (Not that I blame her for being stubborn right now- however, that isn't going to get her home)

The ENT repeatedly told us that this is so much less recovery than tonsils- (and we all know what a non-issue tonsils were for her) but apparently there are several other p-flap kids here that all had the surgery on Wednesday and except for one they are all at about the same place D is. Which makes me think the ENT was way over optimistic..... this has been much more like the palate repair.

The frustrating part is I KNOW she will eat/drink fine once we are home-

Hospital Day 2

The doctors removed the stints early this morning so she is feeling a little better. She just ate a popsicle and made a brief visit to the playroom but is now back in bed watching Wonderpets. I made a trip to Target this morning to stock up on videos (the hospital unfortunately has a very dated collection of videos- and seriously- if I didn't want to watch Barney in the 90's I certainly don't want to watch it now either) So we now have a healthy collection of Wonderpets, Backyardigans, and one that is a collection of all the Nick Jr faves (unfortunately including Yo Gabba Gabba- but it's still better than Barney) We will probably leave several of them behind for the next families who have Wonderpets fans.

The child life specialist indicated that a lot of p-flap kids need more time in the hospital (like 3-4 nights) and that they have a tough recovery but our doc is still saying no restrictions, and leaving tomorrow as long as she is eating and drinking (which is a major qualifier). She has been hit and miss with the food/drink but hopefully she take enough to make them happy. I think she will be much more cooperative at home. I mean this is the kid who we almost had another night stay after her palate surgery since she wouldn't eat or drink ANYTHING but then came home and ate a bowl of mac and cheese.

Out of Surgery and Sleeping in the Room

The surgeon said everything went great and once she feels better she will have no restrictions on anything (Clearly he doesn't know her) She is very unhappy because they have placed stints in her nose and are keeping her on oxygen for the night to make sure she is breathing well. Unfortunately, the stints are also making her unhappy and making her nose bleed (alot) which is unpleasant for lots of reasons (it's also the reason I won't be posting photos at this time) She also has tons of wires for all the monitors and arm restraints on to keep her from removing the stints herself. Tomorrow they will remove the stints and if her breathing maintains throughout tomorrow night we will be home on Friday at some point. The doctor assured me that won't let her go home until she can breathe (ummm, yeah... thanks!) I suspect she will be a champion snorer after this....

She isn't totally out of it though because since she really isn't able to get to the bathroom with all the wires and all, we put a pull-up on her and she cried big tears and wanted her underwear back. Then she fell back asleep.

I am being forced to watch Max and Ruby however so I am looking for some Versed for me too

In surgery

Considering she wouldn't get out of the car willingly- things are going well. She is in the OR now and it will be at least another hour or so before they are finished.

D is getting Meow Meow (Hello Kitty) all dressed for surgery

Meow Meow is ready for surgery- D is still refusing to put the gown on however. We are waiting for the "happy pill" before attempting to get her dressed again.

After a dose of Versed (aka the "happy pill")

Surgery Day (again)

Tomorrow bright and early we will be leaving to drive 2 hours to the hospital that will do D's P-flap surgery. Pray she doesn't freak out- she varies between being almost excited to have mom and dad to herself and complete and total refusal about the whole thing. We have lots of Hello Kitty toys to bribe her/entertain her and her stuffed Hello Kitty even has a hospital gown to wear too (it's amazing what they sell at Build-a-Bear). We will be updating the blog- hopefully with the computer/wi-fi but if not by cell phone.

Any good thoughts or prayers you have would be appreciated (both for D, but also for the other kiddos who have never spent a night without at least one of us home with them)

Home from the Hospital- AGAIN

Last night D woke up around 11:00 crying. One of her surgery sites had begun to bleed so by 11:20 we were at the ER. Luckily the ENT called ahead that we were on our way and we got right in- I never even sat down in the waiting room. By 12:30 they were wheeling her back to the OR to cauterize the spot. Of course, that got her admitted for the night so she and I spent last night t the hospital. As always, everyone was wonderful and they take good care of her there. And now we are back home and she is actually a little calmer than she was but still it is a struggle to get her to rest like she should be. Apparently it is common for bleeds to occur around day 5-10 post op but unusual for them to be this early- hopefully we won't have a repeat in a couple of days or back to the ER we will have to go again

This morning watching SpongeBob Squarepants (you can't be choosy in situations like this)

Eating the first of several popsicles

They have room service so we tried to eat some non-frozen flavored water type food

Seriously though- can we please go home now??

We are Home and She is Eating

Potato chips...

So far she has had 5 popsicles, a HUGE bowl of sherbet and a handful of potato chips. And while she is somewhat crabby so far she is doing far better than we expected. We are supposed to keep her quiet and resting (insert skeptical laugh here) and she can't go to school for a week (or swimming lessons for 2 weeks which she will not be happy about)

I didn't take any photos before the surgery since she was a tad grumpy- although I wish I had thought to bring the videocamera to film her on the way to the induction room after a dose of Versed. Here is a summary of her recovery....

Not doing so well post op- she woke up very distressed and her O2 levels dropped so she was moved to the part of the PACU for more intensive nursing until her O2 level was back to normal. It took about 45 minutes before we were able to be moved to the regular PACU unit

Of course you can't go home until you eat or drink and she wasn't waking up for juice or sprite. The nurse also brought her a slushy and when I asked if she wanted a snowcone (a favorite around our house) she woke right up and was ready to eat the slushy while watching cartoons on TV

And if a snow cone wasn't exciting enough- she got to have a glass of Sprite She was in such good spirits several nurses were surprised she had her tonsils out. On the way out of the PACU we walked back through the waiting room and she made sure to tell everyone "All done" and to wave goodbye

Sleep, Ice Cream, GO HOME

(and in case there is any doubt about keeping quiet B just had to get her off her bike)

Surgery Update 2

Awake and eating a purple slushy while watching Team Umizoomi on TV. So far so good