Pa's Pumpkin Patch

On Tuesday afternoon, we took the kids to "Pa's Pumpkin Patch" in Long Beach. Aside from sitting in her chair for about 90 minutes at a birthday party last Saturday, it was Gracie's first big outing since being discharged from the hospital. It's not too far from our house... and is on the corner of Pacific Coast Highway and 2nd Street... so it is a "patch" of parking lot! But, the kids loved it. And, because of that, so did we! It is strange, though, to hear traffic from PCH and literally smell the salt water while picking out a pumpkin!

When Gracie was discharged last Thursday, they said she could resume all normal activity. I chose to keep her home, let her build some strength and, as I mentioned in a previous post, allowed myself to get us into a routine with her new marathon of treatments. As many of you know from facebook, Gracie went back to school Wednesday, had a good day and then spiked a low-grade fever that evening. During the night, her fever persisted and her secretions increased with a vengeance. The likelihood that this development is "bacterial" in nature is slim... she is on two heavy-duty, broad spectrum antibiotics. Her labs taken on Tuesday afternoon looked improved from discharge, so that is also a good sign, however, the labs weren't ordered to look for any fungal issues (like the yeast she developed in her PICC line over the summer) which are always a possibility when on antibiotics so much and for so long. Thankfully, we have a scheduled appointment with Pulmonology (our third appointment of the week) today (Friday), so we can get a better handle on what the deal is... I hope.

We almost decided not to go to the pumpkin patch on Tuesday - - we were going to wait until Thursday. I'm so very glad that we seized the moment and enjoyed that very small space between.

I took a ridiculous amount of pictures... and so many turned out cute that I had a hard time choosing just a few for the blog. So... enjoy the slideshow!

I have to mention a few highlights that aren't captured in photos (so I don't forget!)...

- Gracie, upon seeing the sea of pumpkins as we entered the gate, signed, independently... "Jack-o-lantern." And, while they were still very much "pumpkins," I was floored and so very proud. We had told her we were going to the pumpkin patch, we had never once signed "Jack-o-lantern."

- Preston, was terrified of the man who ran the little train ride... he had a long, Santa-like beard, with a spider dangling from it. Preston could barely look at him to say thank you for the ride. Let's just hope, for the sake of the Christmas tree patrons, he removes is eight-legged friend come November.

- Gracie was signing up a storm in the petting zoo, mostly prompted, but after we'd been in there a bit, several were unprompted and correct!

- Preston loved the House of Mirrors. LOVED. Gracie and I stayed outside and I heard this terrifying "thud," which I thought for sure was going to be followed by crying and a bloody nose, but instead, the most infectious laughter erupted. John and Preston rounded the corner inside and I could see them... both of my boys, giggling like crazy. Then, bam! It happened again. More giggling! When they finally made it out, we all cheered for joy (for the fun and no broken noses!) and Preston wanted to go right back in!

Foto Friday 2, vol. 17 - "We are a family again."

These words (from Preston, of course) as we all sat in the backyard together on Monday, splashing, soaking and relaxing in the kiddie pools. The depth of his statement was not lost on John or me as we exchanged a quiet look and tear-filled eyes. We know his words did not mean that he thought we weren't a family the whole summer, just that he was so grateful we were finally together again. Sweet, sweet boy... who then promptly splashed Gracie and me.

The hospital journey through photos...

August 4th: Daddy's sunglasses shielding her from the bright lights just before her PICC line was pulled and another peripheral lab draw.

August 4th: After her PICC line was pulled... exhausted, on a Dopamine drip to get her blood pressure up and so very sick.

August 9th: A sibling reunion

August 18th: Playing out of bed for the first time in weeks. She delighted in this toy long enough for me to take pics and then was done! You'd think she'd have been exhausted, but she went several days in a row with no more than three total hours of sleep a day.

Resuming her outpatient VitalStim therapy (twice a day while inpatient) made her very happy!

August 20th: I tried everything to get her to play, to engage her... but she clearly was unimpressed!

THIS is what she really wanted to do!

Discharge Day!

Gracie was discharged on Saturday, August 21st, her 42nd day in the hospital since June 15th. She almost came home on that Friday, but because of some lab results, cardiology held her one more day. In all, she has nine follow-up appointments scheduled in the next two weeks. Five with docs due to the hospitalization and surgery and four others that she missed because of the multiple hospitalizations throughout the summer. You name a specialist and we are headed their way soon.

Reunited! Preston ran out to the car when Gracie and I pulled up! They were SO HAPPY to see each other!

It is, without a doubt, good to be home. It has not, however, been easy. Gracie's feeding regimen is intense. (But, I am happy to report that she doesn't retch and sob every time she is fed! She does, however, tend to be very sleepy while eating, regardless of the regimen.) She is weak. She is tired. And, it appears, once again, that she has a bug. I am trying to be positive... trying to put on a smile when people say, "She looks good," all the while knowing that she doesn't look good at all. She looks puffy - - in her feet and her face - - she looks fluid overloaded again. Her secretions are back with a vengeance and they are not the right color. She has been off of antibiotics (big, big guns... the "we have nothing else to try" level of antibiotics) for one week today - - just one week. The fact that, in the midst of her last course of antibiotics, she managed to spike a fever again for two more days stumped the Infectious Disease docs. I wonder what they are going to think of this latest development...

She is happy to be home, though so tired and so very puffy. There is a striking difference in her face just from Saturday morning (the 21st) to Monday afternoon (the 24th).

School starts Monday the 30th and regardless of her health, that situation has not been without drama either. I won't be going into the details here or on Facebook (for obvious "public forum" reasons), but suffice it to say that the issues are not small and were dumped on us without warning on August 17th, just 13 days before school was set to start.

I long for my girl to feel well, to not be exhausted by her favorite activities, to smile without effort. I long for the "simple" days of our organized chaos. I long for the lighter side of life to exist for more than five minutes. I long for that to show through here on our blog. We have been so touched by the care packages for our family, the gifts for both of the kids, the meals, the calls, emails, texts and posts, etc. We have been wrapped in love, support and prayer by so many wonderful people... some we've never even met... and those things are so appreciated. I can only imagine, without all of that, how awful I'd feel and how poor my outlook would be. I feel like I've been stuck in a rut of serious doldrums for a while, and though I know I have every reason to feel like that, I hate that I do.

So, as I nurse my sweet girl back to health, I am also going to make an effort to nurse my state of mind. To get my "glass half-full" attitude again, I will attempt to make September a blogging month. (Operative word here is attempt.) In between all of the hospital chaos, just prior to it and even during, there have been so many moments that are blog-worthy and I need to get them captured here. So, stop by more in September, maybe leave a comment and let me know you've been around! It will inspire me to actually follow-through and just might help fill my cup past that halfway mark!

Foto Friday 2, vol. 16 - In between the heartache

** Update: Gracie's fevers have stabilized... low grade only. Her blood cultures are now negative and need to remain negative until Monday. At that point, they will do a full eye exam, liver workup and echo to make sure that there isn't any damage from the yeast infection. The pulmonologist also wants to do a Bronchoscopy and a Chest CT to rule a few things out. Provided all of these tests are negative, we could be looking at surgery by the end of next week. Also, I have had several discussions with the Infectious Disease doctor (whom I adore) about Gracie's history and she will be doing a full immunological workup once all of Gracie's labs and tests are negative. **

Foto Friday, in its traditional form, has been at a standstill for weeks now, though not because we haven't taken any pictures. In between the hospitalizations, and even during, we've tried to keep things as normal as possible for both of the kids, and therefore, the camera was still on hand to capture plenty of moments.

In the lobby of the hospital...
waiting to be admitted.
Gracie was so happy to be at the hospital because she thought she was going to therapy. No matter how many times I tried to explain that she wasn't going to "swallow work," she kept signing "eat" along with the names of her two therapists, Ally and Hema.


Hospital Stay #1 - Getting the PICC
June 15-June 19
While she wasn't entirely thrilled to be inpatient, Gracie thoroughly enjoyed some moments of her stay, especially those that included getting a bath, having her hair done and brushing her teeth. Her most favorite part, though, was the visit from her brother.

June 21 - The day before she was readmitted for Hospital Stay #2
It was obvious to us the day we took this that Gracie was not feeling well at all... she had just come home two days before. By the next day, she was in the PICU.


Hospitalization #2June 22 - July 2
While we don't let Preston hang out for more than about five minutes, it's important for him to see Gracie and know where she is while she is inpatient. He understands she is sick and that she goes to the hospital to get medicine that she can't get at home and see all of her doctors every day.

Fourth of July
Gracie had only been home from the hospital (stay #2) for a day and a half. She was super tired and this two hours out for a walk and some time at one of the school playgrounds was all she tolerated. John took Preston out to see fireworks, but for the most part, it was a very quiet day spent at home. We did get some cute pics at the school, though, I must say!



Little Man loves himself some soccer!



Home from Hospitalization #3July 16 - July 22
Though she still didn't look or sound all that great (fluid overloaded), Gracie still wanted to make Preston get on the floor with her. Every time they sit together she tries take him down.

So cute chillin' with Daddy


Pool time
No matter how hard I tried, Preston would not let me get his picture! I had to chase him around his little pool to get one - - he was cracking up the entire time! I took tons of pics that are only a portion of his little laughing face... and I love them all!

Finally, got him!

Little Miss got to sit in about an inch of water and splash a teeny bit - - that's all she could be trusted with! She wanted to splash and do a full "dive," which, because of the PICC, was out of the question.


Addison's 3rd Birthday Party

Preston had so much fun celebrating with "his best girl, Addie."

Gracie is signing, "ready" - - as in, "Ready for the bounce house NOW... stop taking my picture and help me get in there!" She signed bounce the moment she saw it in the backyard. She spent about an hour and a half total hanging out in there while all the kids bounced around her - - as always, she loved all the input it provided. (I, of course, was also in there, supervising!)

Foto Friday 2, vol. 15 - Nothing ever goes according to plan...

As many of our family and friends know from Facebook, the last three weeks haven't gone as planned. Gracie was inpatient June 15 - June 19 and then again from June 22 - July 2. We have been home one week today!

Gracie was admitted June 15th to get her PICC line placed. Unfortunately, the PICC team was not able to get the line placed themselves and sge had to go into Interventional Radiology late the following afternoon and have it placed under general anesthesia. Both the Radiologist and the Anesthesiologist said that he barely got the line in... her veins are "difficult" and he was afraid the entire time he wasn't going to get it in. They both separately said they hoped she'd never need another one. Needless to say, that freaked us out.

Gracie did great during her stay, but due to very poor planning by a case manager (who also had horrible bedside manner), Gracie's discharge was delayed a day because things couldn't be coordinated with home care and supplies for her PICC. We got home on Saturday, June 19th. That extra day (I am sure of it) resulted in both of us blossoming with colds on Monday night and by Tuesday the 22nd, Gracie had a low grade fever which later blossomed into a scary high fever - 104.6 temporal with Tylenol and Ibuprofen - and yielded a visit to the ER Tuesday evening. (Because she has a PICC, we had to be certain that the fever wasn't due to a blood infection.)

I was certain she didn't have an issue with her PICC and knew that it was respiratory in nature - - which wasn't rocket science considering the awful "ick" she had in her trach. First diagnosis: Acute Tracheitis. They immediately began treating her with IV antibiotics and ran every lab you can imagine. Her blood pressure was exceedingly low so they were bolusing fluids into her like crazy. We were finally admitted to CHOC from the ER at 1:30 in the morning. At 5:30 in the morning, they still couldn't get her blood pressure up, so we were transferred to the PICU. Her blood pressure recovered fairly quickly after that, but I was panicked by the amount of fluids they'd given her on top of her TPN and how that might affect her heart. Her respiratory status was poor, but well managed with regular breathing treatments,so it didn't appear that she was harboring too much fluid in and around her lungs.

But, that wasn't all that Miss Gracie had up her sleeves. She decided to let the doctors see many of the things that I've been describing to them for months now. It was hard to tell if she was in the midst of an abdominal migraine cycle or not, considering how miserable she was, but they were certainly paying more attention to her symptoms. On Wednesday morning, she had a lot of old blood in her G-tube. By Thursday, it was frank blood... and a lot of it. On Friday, the 25th, they did an EGD with biopsy. (Esophagogastroduodenoscopy - an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera - flexible endoscope - which is inserted down the throat). While they were amazed (as were her past doctors) at how friable her stomach is - - the scope gently touching the wall of her stomach causes a bleed, as does the tiniest bit of air blown on the lining, this is not new information to us. And like Gracie's previous doctors, they have no explanation or solution for this bleeding issue and moved her out of ICU with the idea to conference about all of her other issues and formulate a plan.

In the meantime, she began having tremendous amounts of frank blood from her trach, caused by the incessant, hard coughing and dry hospital air. Even the cool mist wasn't keeping it at bay. One of the labs came back with parainfluenza, but they didn't do anything new to treat that... it just had to run its course. Gracie had a second bleed 24 hours after the EGD and because of that, we were monitoring the blood in her stools, too. Still no explanations for the bleeds, but they finally understand that the amount of bleeding is more serious than they'd thought even with my previous (and frequent) explanations. Because of the bleeding, her blood levels were low and they were watching her hemoglobin closely. They were considering a transfusion last Monday, but decided she was asymptomatic and held off. Not sure that was wise... she had been lethargic and sleeping 16-18 hours a day since she came home but finally recovered from the lethargy Wednesday. She is still sleeping more than usual (during the day, unfortunately), but that is likely her body adjusting to the sudden weight gain and proper nutrition.

In the first few days, she dropped all the weight she had gained with the PICC... however, she now has recovered that weight and MORE! Woo Hoo! At the end of May, during her horrible abdominal migraine, she dropped to 23 lbs. She was 24.64 lbs on June 15th. As of yesterday, she was 29.04 lbs - - awesome! This is the heaviest she's been since August 2008 and only 1.5 lbs away from her heaviest weight ever... 30.5 lbs at age four. Her nails and hair are growing like gang-busters! The doctor will likely be reducing her TPN volume next week depending on how much more she gains. This is all great news...

However, we haven't resolved the neurological/nervous system issues... and probably won't. Most likely, we will only be able to manage with meds as best as possible. We also haven't determined the source for her literal passing out following feedings. It doesn't happen with every feeding, but it happens at least once a day and usually three times out of the five daytime feedings, regardless of being on the pump or a bolus. It is not a glucose issue (at least that we've caught)... which we monitored in the past for months and monitored during the recent hospital stay. She doesn't appear to have a dumping problem, at least that can be determined with the testing that has been done recently and in the past. (She had a TORTUROUS gastric emptying study during her stay. She has had several in her life, some incomplete because she vomited, but none as horrendous as this one. She was understandably furious about having her hands held down and being bound to a table for 90 minutes. She managed to work her way out of the contraption SIX times during the study... proving that size and health status have nothing to do with strength or will. My sweet girl was so happy to have her hands free at the conclusion of the study that she literally waved to every single person we passed on the way back to her room!)

The majority of our discussions with doctors surrounded Gracie's Nissen Fundoplication and her Paraesophageal Hernia. In the past, her doctors have felt that the hernia was "surgically unremarkable" and too small to be the source of much discomfort. Here, the docs feel that, although it is small, Gracie is symptomatic - - that is, she shows all the signs of being bothered by the defect, regardless of its size. Their hope is that by repairing that hernia and redoing the fundoplication, she will not have nearly as many secretions (as they will more easily be able to flow into her stomach) and that, perhaps, she will be more comfortable with feedings. There is also thought that her pacemaker leads could be making the problem worse when she's fed. In the past she has had diaphramatic pacing which worsened with feedings, so there is a chance that these issues are all tied together given that everything is sitting in the same region of her anatomy.

We spent a lot of time asking the GI team questions and met with the surgeon who was very kind to spend significant time answering even more questions. While we are now in favor of repairing the hernia, we are concerned about several things... the biggest concern being that the Nissen Fundoplication will slip again due to her neurological issues (the frequent retching) and she will be back in the same boat. Since they want her in optimal nutritional status before surgery, we have a few weeks to research, talk to other families (anyone with input, PLEASE COMMENT!) and conference with the team again. She will have surgery in mid-August, but at this point, we don't know exactly what surgery.

She was discharged with the following plan: gain weight and stay healthy.
The trachietis and respiratory ick is better, but because of the large amount of fluid she is getting, her lungs are not sounding so hot. She is getting round the clock breathing treatments and sounds much more coarse than she used to. (There actually was a benefit to the limited fluid she was getting before the PICC... her lungs and heart were operating more optimally... go figure.)

As we beef up our girl, the doctors are hopeful her improved nutritional status will change her tolerance to the G-tube feedings. John and I have been skeptical of that concept since we started discussing TPN... so far, unfortunately, we are right. She is sound asleep right now, as I fed her about forty-five minutes ago. The good news is, she is sound asleep at home. The other good news is that when she is awake, she is a happy, chubbier by the second, camper!

Foto Friday 2, vol. 14 - "Marshmallow Perfect"

Last Sunday was a beautiful, sunny day - - the kind of day that begged for barely dressed, sunscreen lathered kids to frolic in the yard... a day for water tables to be filled, dumped and refilled.


Though she was slow to start both days of the weekend (I bumped up her night and morning feedings), Gracie was out of her room and ready to play around noon on Sunday. She thoroughly enjoyed the distraction that the water table and bubble gun provided in between feedings. As a bonus, she wore her hat the better part of the afternoon - - a record, indeed!


While waiting for Gracie to come out and play, Preston enjoyed a snack of "cracker stacks" (wheat thins, laughing cow cheese and salami) on the lounge chair. "This is the life," he said as he snacked away. It was, according to him...



And then he played "Rocket Launcher" on my knees...



Later on, he dazzled me with chalk by practicing some of his letters on our brick wall. He's doing really well with this, and even surprised me by alternating between his left and right hand...



Gracie worked her way up and down the sidewalk in her wheelchair... (notice the hat is still on?! And, Kim... notice her tank top?! Thank you!)



To finish off a great day in the late afternoon sunshine, Preston, Gracie and Addison took a wagon ride.

Foto Friday 2, vol. 13 - Feelin' Good Friday

Today was a good day!

Gracie had a great, full day at school. She did not crash after her second feeding (as she did on Thursday - - for three and a half hours) and was fairly spunky when I picked her up! So, I decided to take her for a little "beautification." Yes, I could have easily saved the money and given her hair a little trim myself, but my girl loves getting her hair cut and she deserved a something fun that was just about her!

I told her where we were going and she got so excited! She signed, "hair, hair, hair, cut, cut, cut" over and over. She was not thrilled about the ten minute wait, nor the fact that she wasn't allowed to wheel herself all around the salon during that wait, but once it was her turn, she calmed down completely. I told her where to go and she wheeled herself over to the "yellow car" (the taxi-cab chair) and signed, "up." She was ready... ready to take over! Check her out!


After that, we picked Preston up from school - - he, too, had a good day! As he typically does on Fridays, he climbed in the car, stepped over to Gracie's side and said, "Hi, Gracie! How's your day?" My heart always leaps with love and pride as he initiates this exchange, doing his best to sign the words as he says them. They are always so happy to see each other, and when she feels good, like she did today, Gracie signs his name over and over from the time we park until he's in the car and strapped into his car seat.

When we got home, we soaked up the rest of the day's sunshine and played outside for a couple of hours. Giving Gracie a break from the rigorous "force-feeding" regimen for the day was the right thing to do. She deserved today so much... we all did.

Foto Friday 2, vol. 12 - Catch Up (part 2 - Preston)

Party Boyphoto by Catherine Lacey Dodd
Preston had a fabulously fun birthday party at the park. Surrounded by his friends and their parents (and his family, of course!), he celebrated with a bounce house, pinata, pizza and the politely requested (good thing I found one or I'd have been busted!) dump truck cake.
Nana flew in and surprised us all that morning. (The best surprise ever, Nana! Though, as she predicted, after Preston saw her, he promptly asked, "Where's Papa?!" We missed you, Papa!) Grandpa John drove up from Mexico, too! Gracie, who had come down with (yet another) bilateral ear infection and sinus infection (after only ten days off antibiotics), ended up having a pretty good day, as well. There were so many great moments, it's hard to narrow it all down! Here are a few of the highlights:







The celebration on his actual birthday
Just like last year, Preston helped make his birthday cake. Thankfully, he didn't expect me to make a dump truck! I was a little daring and made a soccer ball cake... though the decorating tool I purchased was missing half the parts and I ended up having to free-hand the ball markings! It turned out pretty cute (from a distance!) and, most importantly, it tasted yummy!

As he woke on the morning of his birthday, I could hear Preston's breathing change as he stretched and realized he was actually awake. The next thing I knew, his sweet little voice said, "Mommy...? I'm three now?!"
Sigh. "Yes, Buddy, you are three now," I said choking back the tears that crept up on me as I realized how really big three is and how excited he was to be that big.

For the record, that big, huge bowl in front of Gracie is actually John's bowl! She did not, however, hesitate to dig right in!


Preston the Explorer
Once daylight savings starts, we often take evening walks. One night last month, while it was still a bit chilly, we went on a quick walk around the block. As we were getting ready to leave, Preston informed us that he was going to be an explorer. He got his backpack (and put his "baby George" inside), his fireman boots (but called them his "explorer boots") and his View Master which he said were his "binoculars." We headed out the door and... well... he explored. He found baby animals (which he imagined), looked for "clues" and found a snail that he thoroughly inspected. (And when he was done examining the snail, he stomped on it. I was horrified and actually screamed... John just laughed and said, "That's what boys do." Poor little snail.) One thing he definitely isn't lacking is an active imagination. He told all kinds of stories about things he was seeing and hearing while we were out. I highly recommend going on an such an expedition with your child(ren)... it's amazing what you'll see through their eyes!


Dates with Daddy
Preston loves his Daddy... he loves helping him around the house, he loves watching sports with him, he loves sitting in the window waiting for him to pull in the driveway from work and, without question, he loves going out and about with Daddy.





Mad Hatter
(From late March that, for some reason, I never got around to posting.)I took Preston to Michael's to get a few things and he ended up trying on every single hat they had! We had so much fun playing! :-)

Foto Friday 2, vol. 11 - Catch up (part 1 - Gracie)

Things have been crazy... crazier than normal! And, when the goin' gets nuts, the blog gets neglected! (Especially when some of the "nuts" included a somewhat crashed computer! Thanks to some tech support and my data backed up on a "Click Free," all is well. Don't have a "Click Free?" I highly recommend you go and get yourself one... or something like it!) Anyway, the Flock and their blog are back... and with so much to catch up on, I don't know where to start! (Thus, this is "part 1!")

The week before Gracie's birthday John started his 18 days of vacation. At the same time, Preston got sick again. This time, sicker than all the "icks" he's had this year combined. Our poor little dude was put on antibiotics, didn't want to budge from the couch for three straight days and then was not himself for another week after that. The morning of Gracie's birthday, I knew I was getting Preston's ick. Ugh. Thankfully, Gracie felt great for her birthday and for six days after. Sadly, because Preston and I were too sick to really celebrate, most of her birthday plans got scrapped that weekend. Our backup plan was to celebrate when Nana and Papa visited the following weekend. Unfortunately, I was sicker than the week before and, even more unfortunate, Gracie got sick the day Nana & Papa arrived in town and ended up missing three days of school due to yet another raging, bilateral ear infection. What the what?! I just finished 17 straight days of antibiotics and Gracie just finished ten! John's vacation didn't exactly turn out the way he (or I) planned! Oh, well. What can you do, right?! Dare I even type this next sentence...? But for annoying seasonal allergies, everyone seems to be healthy again. Hopefully that wasn't a jinx!

Now... for the FUN stuff!!!



Gracie's got wheels!
She loves (and I mean loves) her new ride! I love it, too, but to be quite frank, I am also terrified of it! This is a whole new ballgame and it comes with a giant learning curve. I am discombobulated because there is no place to hang her suction or set my purse or stash any of her other "stuff." So, while trying to manage her and keep her from rolling all over the place, I am still trying to get my own bearings! We got it on Thursday, so it's not like I've (we've) had time to adjust yet, but there truly is a lot to get used to.

For instance, every tiny incline or decline is an opportunity for her to go flying forward or backward. Every tiny bump in the sidewalk is an opportunity for her to get stuck. Then when she pushes really hard, she sends herself flying over it out of control. Where the grass and sidewalk meet is tricky because of the edge, etc, etc, etc. She and I spent an hour and fifteen minutes Thursday afternoon navigating the driveway and up & down the sidewalk. I let her lose control a bit to teach her how it feels and what to do. My guess is, this will be how we spend our weekend (and many more weekends).. Her IEP is next week and there will be discussion about Orientation and Mobility for sure! Regardless of the learning, work, fear, etc., it is awesome to see her have freedom!


(Because we have five different fabric types on her custom seating, our only color option was black. The frame manufacturer did not offer any colors we were willing to live with for several years, so we went with black. Besides "wheelchair boot camp," we will be working hard to customize and "girlie up" her new ride!)



New Glasses
Little miss has new glasses... and she's actually wearing them quite a bit! Well, at least for close activities like school work/table work, watching her DVD player, watching TV and "reading." She appears to be getting a benefit from this pair (as opposed to her old ones), because she's far too visually social to wear them just because they are cute!



School Party
It's certainly not hard to tell how much fun she had!

Gracie's class and the class next door making their own party hats

Opening her gifts - - a beautiful princess blanket made by her aid, Betty Lou; a super cute little Disney zipper bag; a darling Disney Princess t-shirt - - all of them perfect for our little princess! It's incredibly heartwarming to know how truly loved she is at school!


Yummmmmmmy! Lots of tastes... don't worry... she didn't actually "eat" the cupcake!



Mint Chip Ice Cream Cake
It's tradition. While pregnant with Gracie, I had Baskin Robbins Mint Chip Ice Cream often. Very often. The last two weeks of my pregnancy (I was thirteen days late when induced and she was born the next day!), I ate multiple bowls... daily. I couldn't stop myself! So, every year, we have ourselves a Mint Chip Ice Cream Cake.

Again... she is tasting frosting and ice cream, not actually "eating" it! Though she was sure making a valiant effort!
(Oh... and FYI... pulling deeply-set candles out of a very frozen ice cream cake is a very good OT exercise!)





Therapy Party
Gracie's Friday E-stim (VitalStim) therapist, Ally, gave her a belated therapy birthday party complete with a hat, party blowers, banner, birthday treats and presents! Gracie had so much fun and loves Ally a lot, as do I. She is so much more than a feeding therapist... she's an advocate, a cheerleader, a supporter, an out-of-the-box-problem-solver, a researcher and friend to both of us. I am amazed at the work she, and Gracie's other wonderful therapist, Hema, do each day. Amazed.
(More on this therapy and other medical updates coming in another post soon.)