Surgery this week... and an anniversary of sorts

On August 25, 2004, Gracie was admitted to the hospital for scheduled open heart surgery - - an ASD repair and mitral valve repair. As heart surgery goes, not too complicated (although when that surgery is for your child, it's all too complicated). We were told the average hospital stay was 5 days... we braced ourselves for "more than average" given all of the intricacies of CHARGE Syndrome and expected that Gracie would be inpatient for about 10 days. Ten weeks later, she was discharged... with a 'repaired' heart, an internal pacemaker and a tracheostomy. All things, for the most part, went as planned on August 25, 2004... but the days that followed brought many twists & turns, few ups, many downs, excruciatingly terrifying moments and agonizing decisions. I don't dwell on the date of August 25th (it does live in my memory) and I am not particularly superstitious, but I do have a "thing" with dates.

So, when I met with Gracie's surgeon two weeks ago to discuss her pacemaker generator replacement (I always called it a "battery"... who knew? ) and he gave me two dates - - August 25 or August 28, I jumped on August 28. He noted my preference and said his office staff would call and let me know. I did not tell him that it was the "anniversary" of her first surgery, although he had her chart in front of him and quite possibly realized. I just explained that it would be better for Gracie and school, therapy appts, John's ability to be around more over the weekend, etc. I did not breathe a word about my sheer terror of having another "August 25" surgery... but in the back of my mind, I was thinking, "why on earth should we tempt the 'date fate'"? So, when talked to his office and they confirmed "Thursday, August 28th," I was so relieved. And, to be totally frank, I am not sure why. The 28th was no picnic four years ago either. But, I associate the 25th with "before her surgery" and "after her surgery."

The bulk of Gracie's complications were not related to her heart at all. In fact, the issue was her delicate airway that was further damaged by the ET tube (the ventilator tube) and once she went into respiratory failure, she became completely dependent on the external pacemaker and, thus, was implanted with a silver-dollar sized pacemaker on September 8th, 2004. The trach followed on September 15th.

I will always wonder in the back of my mind what that 10 week stay did to alter her path... how much different would she be developmentally had she not been deprived of oxygen so many times? Or had toxic CO2 levels? What if she hadn't been so heavily sedated for three weeks? What if she hadn't needed her trach? Would she still have needed yet another and another open heart surgery? What if... what if...? I will never forget the four failed extubations, the look of sheer terror in my husband's eyes when he was always my pillar of strength, the crash cart that sat next to her crib and then just outside her room for over two weeks. I will never forget holding her as she slowly turned a dusky grey and started slipping away from me... over and over... as we tried to put off the inevitable trach (the trach that was supposed to be "temporary" and is now, based on three opinions, a likely "life sentence"). I will never forget not seeing her face for three weeks because she was intubated and covered in tape to hold the tube in place. I will never forget any of it. But I don't think about it too regularly... if I did, I'd be certifiable.

I think of it just enough to remember how far she's come. I think of it to remember how we got to the other side of it all. I know that I can't change any of the things that happened. I can't turn back the clock and make people do things differently than they did then... and there were some mistakes made, I am quite certain. Nothing will change that, though. Instead, I marvel at where she is today given what she's been through in her life - - her birth, the NICU, the PICU (repeatedly) and what she's been through since those ten fateful weeks. Her road has been bumpy at best... with many other medical struggles, both GI and neurological.

I marvel at where she is today because TODAY (Sunday) she spent over an hour in her gait trainer... happily. TODAY she wore her glasses for over twenty minutes before she threw them off. TODAY she wore her hearing aid and sat independently on the floor while we played finger games. TODAY she played at her bar and bench, side-stepping back and forth, standing up and sitting back down for over a half an hour. TODAY she protested because I gave her (what I thought was) much needed down-time and she was bored. TODAY she gave me some doses of "challenging" behavior because now that she's doing more, she's got more attitude! TODAY, she blew (actually, threw) Preston and me kisses. And, TODAY, when she was saying "bye" to her daddy for the week, she signed "I Love You" without any prompting - - she just waved and signed "I love you." She's happy, she's super loving and social, and she's growing, changing and making great strides each day. I choose to dwell on that.
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Please think of her this Thursday as she goes in to have her pacemaker generator changed. For all intents and purposes, this is a fairly "routine" procedure (a surreal thing to say about my five-year-old and her pacemaker) and barring any complications with the leads (the electrical wiring that goes from the pacemaker to her heart), she should be in surgery less than an hour and in the hospital two days.

First Day of Preschool Kindergarten

Thursday, August 21, 2008 was Gracie's first official day of preschool.
(Because of her precarious health over the years, Gracie has been unable to attend school outside of our home. Last year she made social visits to two different classes to get used to the idea of going to school, and although her teacher in the DHOH program made her feel like she was truly a part of the class, she wasn't official.)

THE PLAN

For now her IEP (Individualized Education Plan) reads that she will attend the DHOH (Deaf & Hard of Hearing) preschool for two hours, two days a week (this was based on her "max tolerance" during her various social visits last school year). All other services, including OT, PT and an additional three hours a week of home hospital instruction, will still be in our home. Once Gracie builds up strength and stamina, we will add a day of preschool attendance and remove an hour of home instruction. At that point, I'd like to add hours to her day to build up her stamina for the full four hour day... but none of that is in the IEP at this time.
Besides letting her know we are going to school by signing to her, Gracie looks at a ring of pictures that include her teacher, her classmates and the classroom.

EXECUTION OF THE PLAN

Let's just say that by my estimation Gracie was a total rock star! We arrived during recess... an event that used to be "non participatory" for her... stressful, the sun is too bright (she won't wear glasses or hats) and she was always too afraid to get out of her KidKart (a modified wheelchair/stroller that is also a seating system). In all the days that she made social visits to school, she was terrified to get out of her KidKart whether indoors or out. On that day... she wanted out of it! We parked in the shade next to the playground where the preschoolers and kindergartners were playing and she signed "up" - - not "ready" or "go." I got her out of that seat as fast as I could and carried her over to the playground where she HAPPILY sat (and mostly laid!) in the bark. She played with bark and was very content just "hanging out" and checking out all the kids playing. When we went inside, the OT had set up an obstacle course and she did the WHOLE THING! There was a little slide,
these colored dots that the kids had to walk on, a tunnel and a little
rolling seat that they had to balance on. She did all of it with my
help... but the best part is that she really didn't want the help. She
really tried to do it on her own (she likes to push my hands away when I help her walk... as though she has the leg strength and balance to do it without support... it's too cute! Her teacher, the teacher's aid and the OT were so impressed and definitely noticed the huge changes in her. She colored & she "read" and she wanted out of the KidKart when it was time to sit. Not so great because we needed her to sit, but great that she was super happy out of the seat and not at all scared or overstimulated. She wanted to scoot around and see all the kids! She had a few moments of "melting down" but was calmed by getting out of her chair and having a moment to be "horizontal" and regroup.
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She had a huge day! When we came home, she was not a happy camper... she wanted to "go go go." So, when I put Preston down for his nap, to the backyard we went. (It's been challenging to get her to understand that we can't "go" anywhere but the backyard when Preston is sleeping.) The day before we had planted flowers in one of our patio pots... she remembered and scooted right over to it, signed "flower" and "up." I helped her stand at the pot and realized that she was going to "pick" them! I helped her back down and cut rose so she could play with it. Check her out!


He loves me... He loves me not... He loves me
We also did a little sidewalk chalk ~ although I was far more into it that day than she was... she just wanted to play with her rose!

Then, to top off her day, her home-hospital teacher came to work with her. She was pretty exhausted... and didn't do a whole lot, but remained calm and sat the entire time. Overall, a huge success that speaks volumes about her new-found strength and stamina. (On a side note - - my little night owl was asking for a bath just before her teacher got here around 4:15... then she waited until about six and asked again! She was sound asleep by 7:50pm! She was TIRED!)


My heart was just exploding all day. I have worked so hard with her the last six weeks on her diet (to increase her calorie intake and thus, her strength), her stamina, her "upright" time, her walking and standing and signing... the list goes on. I was so hopeful that the changes I was seeing at home and out in the community would translate to school. But I was also very nervous. Gracie's day far exceeded my expectations. Now I can't wait for Monday!

Preston's language at 15 months

SIGNS:
mommy
daddy
papa
nana
Gracie
apple
cookie
ouch/hurt
airplane
car/drive
motorcycle
computer
coffee
milk
cheese
cracker
grapes
all done
more
ball
dog
cat
cow
tiger
elephant (puts his hand on his nose)
lion
bird
walk (like a stroller ride walk)
yes
no
bye-bye (waves)
hi (waves)
baby
water
thirsty
hungry
eat
orange
diaper
wash hands (see below... that's when he signed this for the first time, too)
potty (learned he could do this when John said "Daddy's going to go potty" and Preston signed it)
bath
book
suction
sleep
please
thank you
sorry
shoes
brush teeth
hat
hot
wind
fruit
strawberry (red fruit)
signing time
binky
rainbow (does the rainbow part, not the colors part - - and says "bow")
flower
fish
boat
phone
bread (discovered he knew this one on 8/13/08 when I said, "Do you want some bread?" and he signed bread)
Erin - PT
laugh (signed 8/18/08 when Gracie laughed. Actually signed "Gracie laugh"

SIGNED PHRASES:
8/12/08: "More Food" "food please" "cheese eat please"

SOME OF THINGS HE DOES:
"dirty clothes" - he knows to put them away when told - - he knows how to put most things away - - he is actually quite tidy!
he knows most of "itsy bitsy spider"
he knows parts of "open and shut them" finger game
claps for joy
plays peek-a-boo
he does the "if you're happy and you know it" song
blows kisses

THINGS HE SAYS:
dada
mama
papa
woof
meow
ooh-ahh (monkey sounds)
hot (now says "hot-o")
ow
wow
apple
ball
says "ep" for "help" and approximates a sign (the sign I can't count yet because it's not consistent!)
bow (for rainbow)
mow (when lawn is being mowed)
"hi" (Nana worked on this on 8/18/08 while I took Gracie to the doctor)

Excerpts from my Mommy Heart

Never underestimate the compassion of a child...

I have always said that Preston is incredibly sensitive and aware when it comes to Gracie. In the last five or six weeks, he has taken over the role of caregiver... or at least he tries! If Gracie cries, he does everything in his power to make her laugh. He will instantly go from busy little climber to be next to her... he becomes quiet, concerned and ever the entertainer. He will go through his repertoire of sure-fire "get Gracie happy" tricks until one works. It is the sweetest thing to watch.
When she coughs, he runs to her suction bag and grabs the large wash cloth we use to "mop her neck up" and puts it on her trach. SO cute... although I always have to tell him that, "Mommy will help Gracie." He has also taken to stretching the suction tubing and pointing the catheter at her. Again... not something I actually want him doing, but it is the sweetest gesture. When she coughs harder than he likes (if he feels she is distressed) he runs to me, all the while signing her name... as though I didn't hear what he did! He is already her protector and guardian.
Wherever she is in the house, he has one ear tuned only for her noises. He knows her various sounds without looking at her... her laughs, frustrations, cries (which to an unknowing ear can sometimes sound quite similar through her trach) and reacts appropriately. His greatest joys seem to be hearing her laugh (in which case he promptly laughs, too... even when he doesn't have a clue why she is laughing) and making her laugh. I LOVE how much he loves her. It makes my heart soar with pride, joy and pure love.

Bumps and Bruises...

Gracie has been far more active as of late... and it's been such a joy... and has brought some interesting challenges. She wants to "go, go, go" all the time - - which is such a change (and not always can we "go" - - try helping her understand that!). She wants to stand and try to walk so much more than ever before. And... she now tends to be more "in the line of Preston's fire." So when he throws a toy (because boys throw things... we are working on what to throw and where to throw it!) sometimes it bonks Gracie. This is a big "no no" and causes great distress... mostly for me! I worry constantly about her only sighted eye being injured - - so obviously, that's a huge concern. Gracie often laughs when something comes flying at her - - not exactly helpful in teaching Preston that he is "hurting" his sister, and obviously not the most appropriate response to pain (although I wonder if, despite the instant bruise or bump, it doesn't hurt her...?). But, what happens after the incident is too cute! Preston signs "sorry" the minute said object makes impact. Then he signs "hurt" and says "Ow ow ow" in the cutest little voice. He then makes his way to her and gives her big love... hugs and kisses. I have to get this on video... but really, I am too busy playing referee! His whole routine is super cute... however, I don't want him to know I think so! And, I need him to know that just because he does all that, doesn't mean that it's okay to use her for target practice! (He usually isn't bonking her with intent to injure... but does have intent to throw stuff at her (or anyone) when he is overtired.)

A Secret Language...

Gracie has about 90+ expressive signs. (Not including counting - - she counts to ten in sign, but doesn't understand the concept of counting. Also not including the alphabet - - she can sign the alphabet and knows most of the order of the letter signs... but not the concept of the alphabet.) She doesn't sign these signs all the time and on a good day is very connected and will even sign two and three-word utterances. These days are very sporadic.
Preston has nearly 70 expressive signs and about a dozen words (all words he says are words he also signs). His list grows daily when I say a word and he signs it, much to my disbelief. I am thoroughly shocked at his ability to pick-up ASL. The other day, I asked him if he wanted bread and he signed "bread." This is not because I worked on that particular word with him, but because he learned it from "Signing Time." (I'll briefly explain - - I diligently work on ASL with both kids and we also have the entire collection of DVDs. When I need to have Preston on "lock-down" to do Gracie's trach care or a bath and I am alone, I have to make sure that Preston is safe and entertained. So, he takes a seat in Gracie's Rifton desk, all locked in and secure. I give him a sippy cup, a book and put on "Signing Time." This allows me to get the things done for Gracie that are absolutely necessary without having to worry about my curious climber.)
Anyway... my dream is that one day (I am hoping sooner than later) they will communicate with sign. In the meantime, they seem to have this secret language - - gestures that often resemble some of the self-stim actions that Gracie has always done, but almost in a rhythmic pattern. It's like they are doing a dance... a secret dance. They do it in the car, in their seats in the kitchen... and if I make a big deal, they stop. I have yet to sneak the camera on them... and have a feeling they'll never let me. I just know they are communicating with each other... and I know that because I am the mommy, I will never obtain rights to their secret language decoder ring.

Last Weekend... some precious "Daddy Time"

Daddy and his boy

Gracie LOVES to check out trees. I can't wait for the day that she can climb one!

John's life at the Academy is stressful and intense, to say the least. His days are filled with rigorous physical activity and hours of academics. He is holding his own and taking it, literally, one day at a time.
(Check out this article in the Sacramento Bee from Sunday... John is in the picture on the front page!) http://www.sacbee.com/107/story/1158454.html


His weekends are crazy busy, too. In order to keep up, he studies quite a bit. Clearly our home is not suitable for studying (uh... way too crazy!)so he is often gone by 9 or 10 am and usually home for dinner/bath time. These are precious moments that are soaked up by the kids and me.
Last weekend, we had a special treat... all four of us went to one of the new water parks on Saturday evening. (A lot of the new parks have multiple play structures and water features - - which is beyond great in this heat!)
We had a ball... all four of us played and played! :-) (And it helped soften the blow for the serious "Daddy Deprivation" we experienced this weekend.)

Gracie had fun gently reaching out and feeling the water while Daddy and Preston ran around. Then, the water features switched and we got drenched! She LOVED it and laughed!

Preston ran right in... and got soaked!

Oh to be a giggling child on a swing...

Make photo slide shows at www.OneTrueMedia.com

Gracie's fondness for the swing has recently been rekindled... and it's quite a love affair, as you can see! This was taken last week when my mom and I took the kids to the park and I will never get tired of watching it!

The perfect park outing for her is in the evening... not too hot and the sun is long gone. She is incredibly light sensitive and too stubborn to wear a hat or sunglasses for any length of time - - except, of course, for photo ops! She knows when to glam it up and when to be a little diva! Ha!

Big day and a big decision

Big Day
On Wednesday, August 6th, Gracie had her first OT session (Occupational Therapy) in a school setting... and she did GREAT! (She is currently making up sessions that were missed during the school year due to lack of staffing by the district.) This was a huge milestone for her and incredibly encouraging. Previously, Gracie has been too ill or too terrified in unfamiliar settings to even attempt spending an hour in a therapy room and thus, all session have been in our home. She has seen the therapy equipment at the hospital and in the "gym" at the infant program offices and then watched the kids play in the therapy room at school visits, but none of that was ever a positive experience. When she was doing her "social visits" to school, she refused to get out of her Kid Kart and be on the floor (which is her favorite place to be at home... although that is slowly changing, too!) so we really weren't sure what to expect yesterday.

The minute that we walked through the door, she began to cry and get very anxious. Her therapist, Rebekah, and I thought "Uh-oh" but just continued on. I took her out of her stroller and Rebekah set up a platform swing with tire on it and took a bear for a little ride! Gracie chuckled, scooted off my lap and then proceeded to play for the entire session. She tried four different pieces of equipment. The day was about play and comfort, and thus we didn't push her limits so that she'd have a very positive experience and have happy memories for our return next week. I am so very proud of her!

That wasn't the end of her busy day by any means. When we got home, Preston napped and Gracie and I enjoyed the backyard. She "helped" me plant some flowers and do some trimming, we sat under the misters on the patio and she spent some time in her Gait Trainer. When Preston woke up, we were still back there! She finally got too warm about 3:45 and we went in. I thought she'd need some down-time, but nope! She scooted off to the playroom and wanted to work at her bar and bench. She became quite frustrated when I told her she had to wait while I fed Preston a snack - - which is just so funny - - because not too long ago, she was the one signing "wait" when it was time to do all of this physical work!

Later we even had another outing to the pharmacy and grocery store which she now LOVES! (For those of you who don't know, the grocery store used to be a terrifying place for her... the lighting, the temperature variances from one aisle to the next, the smells... it was all too much for her to process.)

Needless to say, I LOVED yesterday!

On her bench - her reflection in the mirror

Signing "sit"

Working hard

Big Decision

I have given up nursing help for the time being. I know... you all may think I am crazy, but let me explain. I have spent the last 3 1/2 weeks without nursing help and two weeks of that were without any help at all because my mom was gone, too. Although it is challenging, it is not impossible. The truth is, I love it... and since I can do it right now, I am going to! The stars have all aligned - - the first one being, of course, the fact that I am not working while John is gone. The second "star" is that Miss Gracie is doing so well and improving in so many ways every day and third, Preston is no longer a "baby" and though super busy, is a sweet boy and manageable with his sister. They actually have formed more of a bond now that it's just "us" in the house. (I guess the fourth thing is that I still function very well on very little sleep! :-))

So, in the end of all this, it's safe to say that the nurse who completely flaked on us has done me a tremendous favor. I never would have known I could do this without a second set of hands in the house all day had it not been forced upon me. And the truth is, I am the happiest (and busiest and craziest) I have been in years... with the exception of my absent husband, of course!

To those who posted recently... Thanks! :-)
Cresenda - - thanks for your kind words! So sorry I missed you... I didn't even see your post until after you had passed through town. Will check out your blog! :-)
Hannah - - thanks for your kind words, too! :-) We aren't too far from each other... perhaps we can figure out a time to try and meet...? I have to tell you... We have a new cupcake place in town and when it opened, I thought of you one of your old posts about your favorite place to get the delicious treats! :-)
Catherine - - Miss you tons. Feels like forever since we last chatted! Would LOVE a visit so much! :-) I'll email you about those little collages! :-)