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.

The TPN Plan

(Warning: I'm tired... I hope I make sense tonight!)

Today we met with Gracie's GI doctor and, after a very long conversation and seemingly endless questions and answers, we came up with a plan.

Gracie will be admitted (date to be determined) to receive a PICC line. This is a line that will be placed peripherally (not a surgery, thus no general anesthesia will be required) to allow us to administer TPN. The site for this catheter should last Gracie about 6 weeks, maybe a bit more. The doctor's hope is that, in those weeks, we can stabilize her digestive system, put some weight on her and then hopefully return to G-tube feedings full time. Since Gracie's always struggled with GI and feeding issues, regardless of her nutritional status, John and I aren't overly optimistic that the six weeks of TPN will "cure" her numerous GI-related issues; nor do we think that the abdominal migraine cycles will stop entirely. At the same time, we would rather not put her under general anesthesia to place the line and attempt TPN if we don't have to. Therefore, we opted to try the less invasive PICC line first. Then, if we, as a team, decide to continue with the TPN, they will place Broviac catheter under anesthesia. Should this be the route we take, we would also be combining a few other pending minor surgical procedures with that single anesthesia.

Gracie will be in the hospital approximate four to five days, during which time they will monitor her TPN intake and build up to her full 14-hour per day regimen that will provide all of her daily nutritional requirements. We will need to continue feeding her small boluses through her G-tube in order to keep her digestive system active and functioning, but the number of feedings/volume per day will be reduced and the nighttime feedings will be completely eliminated. She will still receive all meds via G-tube. Again, John and I don't expect that Gracie's issues will be completely resolved. But, with less pressure to "force feed" her and the ability to back-off the enteral nutrition (through the G-tube) when she is in the throws of a cycle or is sick (because anytime she has any type of illness, it manifests in her gut, too) the faster we can get her through the cycle or illness without compromising her nutritional status.

We have numerous things we are concerned about regarding this proposed regimen - - for starters, how will we keep her happy and connected to an IV for 14 hours a day, especially since when she's feeling well, she doesn't sleep much more than 7 hours in a 24-hour period?! But until we get to that point, we aren't going to borrow trouble by worrying about all the "what-ifs." (Well, we are going to try not to do that.) The bottom line is that we've exhausted every other option - - the pros far outweigh the cons.

As for the abdominal migraines, there is very little research on this subject matter, especially in pediatrics... that has been a challenge for us and so many other families who are struggling to get successful treatment for their children. Furthermore, there are many doctors (even in the most progressive hospitals) who do not recognize the condition as a "real diagnosis" and try to treat it by "knocking out" the patient rather than finding the root of the problem. Gracie's old GI doc (in Sacramento) was progressive in that sense, and truly recognized the problem. However, she was as helpless as we were in finding a solution. Perhaps that is finally going to change. Today we were made aware of a study currently being done by a doctor at CHLA (Children's Hospital Los Angeles) for which Gracie might be a candidate. Stay tuned on this...

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.

Glimpses of our girl and the Upper GI

Good news... Gracie has been spotted! We've seen glimpses of our giggly, sassy girl and we sure are happy to see her when she appears! She woke up this morning happy, begging for a bath and asking to get dressed for school. Granted, it was 3:30 in the morning, but still! She had been fasting (for the Upper GI) since about 9:45pm and was, therefore, in a fabulous mood.

Upon arriving at the hospital, she waited with me to check in and then took off, wheeling herself through the lobby to the elevators. Despite my best efforts to explain to her that we were there for pictures of her tummy, she was expecting therapy with Ally or Hema and was furious with me when I told her it was my turn to drive her wheelchair. She was not happy about waiting around, but then was a total trooper during the study itself. Once she understands she's not staying at the hospital, it's amazing how well she does for various procedures - - especially considering all she's already been through and what she's currently going through. She handled the barium well, just a tad over an ounce, but then was extra junky for about thirty minutes afterward.

The radiologist informed me that she definitely does not have SMA (Superior Mesenteric Artery Syndrome) - - that is good news. She did not, during the brief study, reflux any of the barium - - also good news. (She has not shown signs of reflux for the past three Upper GI studies or her last two Gastric Emptying Studies, though many doctors assume the increased secretions following feedings are reflux related. We think otherwise... it's more about her body's response to the discomfort and digestive process. She has great difficulty processing fat and protein, no matter how broken down the formula is. Dr. Grant indicated on Friday that what we describe, coupled with her surgical history, doesn't sound like reflux to him either.) The radiologist confirmed that her Nissen Fundoplication is slipped - - we have known that for years. He confirmed she has caused a Hiatal Hernia - - we have known that for years as well.

Previously, Gracie's team determined that surgery to repair the hernia was not indicated, as the hernia is not that severe. We will see what Dr. Grant and Dr. Idries think... especially since Dr. Grant discussed Gracie's Fundo with me at length on Friday. While he doesn't dismiss the idea of her abdominal migraines cycles and migraine headaches at all, one of his opinions is that Gracie's body has been reacting to the Nissen Fundoplication all these years. The intolerance to feedings and excessive, clear, stringy secretions that she produces for hours on end are common reactions he has seen in children who were, as it turned out, not good candidates for a Fundoplication. Gracie's Fundo was done at seven weeks (due to repeated vomiting and reflux which caused aspiration pneumonia), so we have no way of comparing the before and after. We do know this... the cycles are predictable and come in waves, so while the issue with the Fundo could be exacerbating the problem, we don't believe it is the only problem. And really, we still don't know what the problem is.

For now, unfortunately, we are supposed to just wait and continue what we've been doing. Dr. Idries will get our messages when she returns from vacation tomorrow and, hopefully, she will conference with Dr. Grant and then call us before the appointment next week. Yesterday, following her second feeding of the day, she slept for four straight hours and then slept intermittently until she "snapped out of it" a few hours after the fast started. She's asleep right now, and has been, since her second feeding of the day. (She handled her first feeding following the fast pretty well. She sat at the table and colored with Preston and we practiced tracing some lines and circles. Once she had that next feeding, she checked out again.) The abdominal migraine cycle is over, thus the continuous, excruciating pain has subsided. John and I decided that we will back off of Gracie's feedings during the day (go back to her regular "school/therapy" schedule) and send her to school tomorrow and Friday. We made this decision based upon the fact that if we aren't feeding her around the clock, she is herself again. She deserves the chance to have a couple of good days at school and then I will resume the 'round the clock "torture" over the weekend - - all of this contingent, of course, upon whether we hear from the doctor sooner rather than later.

So, we are in holding pattern of sorts... waiting to discuss all options and risks, waiting for answers to our many questions and waiting to schedule her admission.

And, again... a huge thank you to everyone for the emails, texts, voicemails, blog comments and FB messages... we can feel all the love and support... and we are so grateful. We wish we had time right now to get back to each of you personally... we hope you understand why we haven't caught up with all of you yet!

She lost an entire week

Thankfully, the worst of the cycle appears to be over. Gracie was a little better today - - she was not crying as much, she didn't bite her fingers or hit her face and we weren't having to suction her continuously as she dealt with her feedings. Still, though, she slept a lot. So, while she's better as far as the excruciating pain goes, she still missed nearly the whole day. Don't get me wrong... sleeping all day without pain is way better than sleeping all day with pain. But in the big picture, sleeping all day is no way to spend the day. With the exception of her doctor appointments (which she cried through or "checked out" of), she has literally missed an entire week.

We've been asked by several people what made this cycle so bad compared to others she's had recently. The answer is not simple... and I am not sure I know the whole answer. What I do know is this: the fastest way to help her out of the cycle pattern is to give her body a break and stop all intake for several hours and then once we re-start, move very slowly with Pedialyte and then every twelve hours or more, build up her calories. Sometimes it takes a few days to successfully get back to full-strength formula. The problem is, that in between cycles or illness, we are not able to get much weight on her. When she does gain a bit of weight, she inevitably hits a wall (like she did this week) and we end up starting over. We can't keep chasing a weight that is an unhealthy weight to start with. We also can't keep causing her so much discomfort during illnesses or abdominal migraine cycles (or regular migraines) by force-feeding her. I am sure that's what caused this current cycle to drag on and on. And, it doesn't seem like the medication increase has done much of anything, but, the only way to really tell is to resume a regular schedule (like school, therapy and FUN) and see how she does.

Thus, we are in big debate about what to do next and when. Gracie is scheduled for an Upper GI series on Wednesday, but can't see her regular GI doctor until the 8th. We aren't thrilled to be waiting that long to discuss (and move forward with) the next step. We can continue doing what we've been doing for a while, which is to balance out and time her feedings so that she can "live" - - enjoy her days and tolerate school/therapy as best as possible. (Even though she spends a great deal of her day at school, they only give her approximately 1/8 of her daily intake. When they give her more (and often lately when they give her the normal amount), she sleeps at school - - or she takes a long time to recover and doesn't want to sit up and work/be engaged.) The problem with continuing like this for another week or two is that we will maintain her current weight (maybe... if she doesn't have a cycle again in the meantime) and we are still causing her discomfort. Her current weight is not an acceptable weight. Force feeding her around the clock to the point that she can't function through the "living" parts of her day is not acceptable.

So, I will call tomorrow to find out if we'll be able to discuss Wednesday's Upper GI results before next Tuesday and plan for the central line placement (and all that entails). We have a million questions written down... many of which surround the care for the site and the specific risks to Gracie regarding potential infection due to her trach and the different "bugs" she already harbors in her respiratory system. Having the line is, we feel, her only choice. She needs to be rescued from this pattern and her body's reaction to anything traveling through her digestive system. We can't wait and trouble shoot any more. She will need heart surgery soon... and she can't have surgery at her current weight. Her scoliosis could be contributing to the discomfort as well... and if that is the case, spine surgery might be sooner than later.

Over the last heartbreaking, painful week, we've questioned ourselves repeatedly... trying to make decisions for the right reasons. We have been analyzing what we are doing for her and making sure that these decisions are truly in Gracie's best interest. That is, to say, that we are making decisions to do things for her and not just to her... for her, not for us.

******************************************************************

A huge, heartfelt thank you to our wonderful friends, Jackie and Dave, and their son, Danny, who had Preston over to play (all day) both Saturday and Sunday. Knowing Preston was having a great time and being well taken care of gave me such peace of mind and allowed me to tend to Gracie's needs without feeling like I was neglecting him. As he has other times before when they've kindly helped us out, he had a blast with them. Over the two days they played at their house, went to My Gym, Pretend City, the Tot Lot at the beach, and a barbeque. So this morning, when Preston woke-up, he wanted to know what time Jackie was coming to pick him up!

Other friends and neighbors have been so thoughtful and brought us enough food to feed an army! We had homemade lasagna, french toast casserole, pizza, chicken salad... so much food... from people who knew that we were still able to cook, but they didn't want us to have to think about it. So nice... especially since John worked all weekend.

Thank you to everyone, again, for all of your love, support and prayers. I will do my best to update as we get more information about lab & test results, answers to our questions and the next step in the plan.

Today's GI Visit

Let me first say how much everyone's thoughts, prayers, love and support mean to John and me. We've received so many messages on FB, emails, voicemails, texts and messages here on the blog. This is a very difficult time... the most difficult since her extended time in the PICU in 2004, but for very different reasons, of course. We can feel all of you supporting us, loving us and our sweet girl. "Thank you" seems like such a small phrase, but please know that it is said from the bottom of our hearts. We wish we could get back to each and every one of you individually, but right now we are focusing on taking care of Gracie, Preston and ourselves.

As for how Gracie is feeling, she is essentially the same as she's been since Monday evening - - miserable, lethargic, disengaged, sleeping a lot, crying a lot, gagging, retching, so many secretions (a response to pain and something entering her stomach and running through her digestive tract) that I literally don't turn off the suction machine as I switch back and forth from suctioning her trach and mouth.

She was seen this morning by the Assistant Chief of Gastroenterology, Dr. Grant. He is one of two docs that our team up north recommended, but he doesn't take new patients, so this was our first visit with him. I was happy to finally get to see him, but obviously not by the circumstances. He spent a considerable amount of time with us, listening, asking questions, listening some more. He really heard me. Not that her current doctor hasn't heard me, but Dr. Grant heard a lot today, all at once, and really tried to take it in before he jumped to asking questions - - which is what a lot of docs do... try to provide a solution before they've really listened to the whole problem. (We've been to several doctors for these issues over the years... she's been seen by two doctors at Sutter Memorial, a doctor at UC Davis, a Fellow at Stanford and now three different doctors at CHOC.)

Anyway, we left there with a game plan: labs ordered, an urgent Upper GI study ordered (to check things out and to rule out a condition (SMA) that is caused when the body is so thin, the intestinal tract and spine collide causing an obstruction, thus excruciating pain) and her Neurontin increased significantly (this will likely make her out of it, but that's what we need to get nutrition in without causing so much distress). The bottom line is that we need to find the problem... and we might not have time to find it (since we have spent seven years trying to find it already) before her little body needs to be rescued nutritionally. The rescue would be to put in a central line so we can give her TPN (IV nutrition). This decision is one we've been headed toward for a long time, but it's not a decision to be taken lightly... for reasons that I am, quite honestly, too tired to detail here now. We will do this, most likely, within the next two weeks if we can't force feed her through the pain and discomfort successfully (and have her keep it all in). I am not overly optimistic about giving her meds that make her a "zombie," nor are we okay with her being shut-down like she's been this week (and so many other weeks of her life)... having her go through her days disoriented and checked-out is not a good solution. It's not a way to live.

This afternoon, when Gracie and I got home and I went to feed her, she had about 10ml of old blood that rose in her G-tube. She needed to be suctioned, so I clamped the tube for a second and she proceeded to throw-up more old blood. I immediately gave her Carafate (a med that helps heal the stomach lining), called the doctor (who had already left for the day) and finally got a call back this evening. This is not the first time that Gracie's gastritis has flared up, but it's the worst it's looked in over three years. She still has a tremendous amount of old blood in her stomach (which is shocking considering I have had her tube vented all week and haven't seen any new blood). So, I figured they'd want to admit her, but they don't - - it's a three-day weekend and unless the blood starts looking fresh (bright red) or she starts looking/acting worse (how much worse can she get?) or dehydrated, they'd rather her be able to be miserable at home than in the hospital. Dr. Grant ordered Carafate (um... already doing that, Dr. Grant...) and asked me to keep a close eye on her intake, output and behavior (um... already doing that, Dr. Grant). He wants to be kept apprised of any changes and be paged if we decide the ER is necessary. I guess I should be flattered that they know I am doing everything here that they can do there (aside from IV fluids if she'd need them), but I really just wish they could start the labs and studies now, instead of next week.

The central line is, as I've said before, not to be taken lightly. It is the last option we have. Even as we put her through this current set of tests and labs, the consensus is that's what Gracie will be getting within a couple of weeks.

Knowing we're headed to our last option to solve a problem that can't be identified is a scary thing...

Gut Wrenching

It is a terrifying and heartbreaking thing to watch your child and her body refuse the very thing she needs to live.

Since the day she was born, Gracie has struggled to tolerate feedings. Whether it's calories or just hydration, getting what she needs into her little body has been difficult. In the early years, we'd be able to "force feed" her, literally making her be on the pump every single second she could bear it in order to keep the proper hydration and nutrition in her.

For the better part of the first three years of her life, she struggled with abdominal migraines/cyclical vomiting syndrome on a very predicable schedule... every 11 to 17 days and they'd last anywhere from two to five days (sometimes seven). She'd be truly down for the count... intolerant to light or movement. She'd tolerate a cool washcloth on her forehead, but not much else. For the first day or two, we'd literally have to stop all caloric intake and just give Pedialyte... but usually, she'd need to have a break from anything at all for at least 12-24 hours and it would take a week to get her back up to full strength formula. We learned how to manage it as best as we could - - knowing at what point she'd need to be admitted for IV fluids, knowing the signs that she couldn't manage an increase in the richness of the formula... all of it was down to a science. Finally, we found a combination of meds that seemed to help manage the intensity and frequencies of the cycles. As she got older, she started having fewer abdominal migraine symptoms and presented more like regular migraines. Again, through trial and error, we found a combination of meds that helped keep it all at bay. She's never been truly "cured," but the severity and frequency improved drastically.

It's no secret that the last handful of months have been a struggle in our house health-wise. Since January, we've not gone two weeks without someone having something. Nearly every family I know with more than one child has had a somewhat similar winter and spring, so I didn't pay too much attention to the details of the recent patterns (that is to analyze them - - I still make note of everything related to Gracie... charting little notes each day related to her feedings, especially), until now. Going back on my "Gracie calendar," it's seems pretty clear that the cycles are back. Whether they are actual abdominal migraines or reaction to the pain from her recurrent ear and sinus infections is not clear... though I think it's likely a combination of both. Or... is it that the increased intolerance to feedings creates increased, tenacious secretions which, in turn, cause fluid in her ears and sinuses to build up thus causing the infections. One thing is certain, the pattern is about every 16-22 days and it lasts about five days. It's most definitely the reason that we can't get weight on her and struggle to maintain.

This is not a new problem - - it's always been a problem. Her highest weight was at four years of age... 30.5 pounds. Since her pacemaker generator replacement in August of 2008, she has dropped from 28 pounds to 23. She's teetered between 24-26 over the last several months and now is back down to 23. We are scared. She is wasting away. Her face is so thin that her cheek bones are protruding slightly and you can actually see the bones around her eye sockets. Her pacemaker is clearly visible on her left side.

On Monday afternoon, a feeding caused Gracie to become absolutely hysterical. Monday night she was so upset that she required constant suctioning for the better part of three hours. She was clearly in pain - - hitting herself in the face, pulling on her lips, biting her fingers to the point of bruising. We had to vent her G-tube the whole night and stop all fluid intake of any type to help her calm down and relax. She was so worked up she spiked a fever of 103. On Tuesday, we struggled to keep her hydrated (she'd already missed so much the night before) and with every small bolus, she was sweaty, cried, retched, gagged and hit herself in the face. She'd require nearly constant suctioning for about 45 minutes afterward and then, a switch would turn and she'd be fine again... until the next time she needed fluid. Forget about hooking her up to the feeding pump for a slow feed... she absolutely hates being tethered to it on a good night and becomes self-injurious if connected while awake.

It's heartbreaking to see her like this... we are helpless... she is in pain, we can't help her. When you have a baby, feeding him or her is such an intimate connection... it's nurturing, it's loving and the very thing that sustains your baby's life. Gracie's body does not easily take in that nutrition. Her desire to eat orally is cruelly contradicted by her body's inability to swallow... and yet, even if she could eat, her body can't process it.

We want to have her admitted, but are so hesitant. Her GI doctor is on vacation... the GI doctor we saw previously said to solve the problem we should just force feed her. Not a solution. That's what we've been doing her whole life during these times... forcing fluid into her. When she stops violently retching, gagging and reacting to the betrayal she feels and the pain she's experiencing, she literally just passes out from exhaustion. She checks out - - sleeps - - in an effort to escape the pain. She has literally missed yesterday and today. No, she's not dehydrated because we are forcing fluid and nutrition into her, but she's not present. Our child has her best days when she is not getting anything at all - - no formula, no water. It's an unthinkable pain we are experiencing as her parents... feeding her is torture. Yet, so is not feeding her.

Knowing she is in the beginning stages of heart failure again only compounds this issue... she needs surgery soon, but cannot possibly have it without weight gain. We ask for your love, positive thoughts, prayers, support... whatever you have in you to give and send Gracie's way as we try to navigate this problem, yet again, with doctors who barely know her or us.

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! :-)

Happy 3rd Birthday, Preston!

Dear sweet boy of mine,

Is it true? Can it be? Are you really, truly turning three?!
Where did the time go? Didn't you just turn one? Sigh

I've just spent the last hour watching videos of you. When you turned two last year, I thought you were such a big boy. And yet moments ago, as I watched footage of you from 365 days ago, I found that a part of me wants to shrink you back into that little two year-old. You are so big now... even so much bigger than you were just six months ago.

At three, you can spell your first and last names and are working on your middle name. You know mommy, daddy and Gracie's full names (first, middle and last). You know your birth date. You can count to twenty and recognize numbers one to fourteen. You are learning about money and despite always wanting to give a dollar to the Children's Miracle Network at WalMart & Costco (which is really great and helps sissy... which you know and is why you want us to give the dollar!) you save all change you can get your hands on for the Jeep you want to buy someday! You know your upper and lower-case letters by site. You're doing great with phonics and have started to recognize a few sight words. You are working on writing your name and have the "P" and "O" down pat. You continue to enjoy playing on the computer and are great with the mouse. You also do a pretty well finding the keys to type your own name. Reader Rabbit is one of your favorites of our software. You also love the "painting" and "drawing" program we have. Online, your favorite game site hasn't changed - - it's pbskids.org and you love playing the "Clifford" games. You are also really great at memory on the computer and can easily play a twenty-square game without much repetition of things you've already seen.

Your love for sports has grown exponentially. For your age, you continue to exhibit impressive coordination. You bat and throw lefty and righty - - the jury's still out on what you will "be" because you still switch back and forth a lot - - but you appear to be leaning toward south paw. You love asking me to run really far from you, drop kicking a ball and seeing how far it will go and how accurate you can aim. Some of your favorite things to do in the late afternoons (while Gracie and I are at therapy) are to play "tennis" with daddy in the driveway, hit pitched balls in the front yard or at the baseball field and shoot hoops and practice dribbling in the backyard. We have had to raise the hoop yet again to keep you challenged! This summer, you will play soccer for six weeks with your friend Danny through our local community center. You still love riding your bike (tricycle) and easily manage a bike with training wheels. You're a pro on the razor scooter now and enjoy riding it around the block or to the park.

Your active imagination has been sending us on "explorations" lately... where we find imaginary animals and insects hiding all throughout the neighborhood... or in our pockets. We've been on "shape" expeditions, too, where you will tell me every shape you see as we are walking. You tell wonderful, silly stories about any and everything. Books are beloved and you can spend forever reading, especially at night. Thanks to Nana, most of my childhood books are now yours and Gracie's. Every couple of weeks, I bring new ones out and it's like you've won the lottery! You love it! You're not unlike your friend, Curious George, wanting to know how things work, how they are put together and what happens when you take them apart... even if they aren't supposed to be taken apart!

You've been to the movies twice now... both times you saw "the dragon movie" - - once in 3D and once "with no glasses." On both occasions, you were incredibly well behaved, never budging from your seat. The second time, you stayed awake the whole movie (you fell asleep the first time with ten minutes left!), but sadly, refused to share your popcorn with daddy! We can't wait to take you to see Toy Story 3 and the live show, Walking With Dinosaurs later this year.

I lovingly refer to you as the "social director" because you are constantly making new friends and wanting people to say hello to each other. You don't hesitate to make friends at the park, confidently saying, "Hi, I'm Preston. What's your name?" You frequently request to call Nana & Papa and Grandpa John. You prefer to dial yourself... so we just tell you what numbers to press. Then, you chat away while Daddy and I remain in the background providing "translation" as needed. At school, you have lots of fun, though you still beg not to go sometimes. However, once you're there, you walk right in like you own the place and sometimes even forget to say "bye." The best is picking you up from school... you come running, grinning ear to ear, yelling, "Hi Mommy!" or "Hi Daddy!" Then you run back because "I have to say bye to all my friends." You love your friends and chatter about them all the time, especially Addie, Jonah and Danny.

You continue to be a loyal protector of your sister. When others acknowledge you, they'd sure better acknowledge her. You are so eager to see her and often tell me how much you miss her when she's at school. You love getting on the bus with her in the mornings and faithfully sign, "Have a good day! I love you!" You wave to her disappearing bus while we sing "Wheels on the Bus." When you see her later in the afternoon, you never forget to ask how her day was. You often now ask how she's feeling and seem to be more acutely aware that she's different and more fragile from yourself and your friends. You constantly feel the need to help her, even when she doesn't want it. At the same time, though, you are a typical brother and get easily annoyed when she wants to be close to you. I can be in the kitchen and hear, "Gracie... stop touching me." And, while you will push her hand away, you are (almost) always very gentle and if she doesn't stop, you just get up and move. And, like sisters should... she just follows you! The other night, you let her sit in the big recliner cuddled up with you. She was so happy and cozy, she fell asleep and you said, "Shhh... mama, Neener is asleep. Tiptoe."

You say some of the most hilarious things ever... which is good, Bubba, because there are moments when you are testing my patience to the very last thread and then you bust out with something so funny, I can't possibly keep a straight face! You're pushing limits and testing me (and seeking consistency with those limits) in ways that you never have before. There is an anonymous quote, "Mothers of little boys work from son up till son down." It is so true! From the moment you hug me and say, "Good Morning, Mama," you are going non-stop. The busier, the better. Regardless of how busy you are, how ragged you run me, how much you're refusing to listen and how many times you push my buttons and the limits I set for you (which is nothing more than the typical three year-old stuff that you're supposed to be trying to get away with), one thing is certain, you are my "sonshine."

You have taught me things about parenthood that I hadn't yet learned with your sister. You've expanded my heart and awakened the child in me who loves to run and skip. Because you're not preoccupied with a million things at once, you really observe the world around you. By asking me, "What is that over there?" or "Do you hear that sound?" you've taught me to pay better attention to my surroundings so I don't miss something... like the hummingbirds flitting around at the end of the driveway yesterday or the cloud that looked like a Christmas tree last week. You've taught me that there is a lot I still need to learn - - more than I thought! It's amazing to watch you grow and change, Bubby. You are a sweet (albeit snail-stomping!), caring and compassionate little boy who brings so much joy to those around him. As with your sister, I learn more from you than I could ever hope to teach you. Thank you, Bubba, for bringing me endless joy and pride... it's a privilege to be your mommy. I love you so much.

Happy Birthday, Nugget.

With my whole heart,

Mommy

A few notable things you've said recently...
It's been so long since I've done this... I've been keeping an email draft saved over the last several weeks and trying to type things as you say them. Note to self... get better at making note of the cute things Bubba says before he becomes a teenager and stops saying cute things!

- Said last weekend as I blew your hair dry because you were cold... I had to ask you to repeat it because I couldn't believe my ears!
"Ahhhhhhh. This is the life!"

- On Daddy's birthday...
You sang the entire "Happy Birthday" song the minute he opened the door from work.

You then proceeded to tell him, "Hurry up, Daddy. We bake cake for you. We need to build candles. Mommy, Daddy need a hat."

I promptly grabbed some scrapbooking cardstock and made a makeshift party hat for Daddy.

- A few weeks ago...
"Where is God?"
Where do you think God is, buddy?
"The North Pole!"
Daddy explained to you that God is in Heaven and is all around us... to which you replied, "Heaven is beautiful."

- This one makes me laugh every time I think about it...
"Mommy, where is your pee pee? "
Mommy is a girl, I don't have a pee pee.
"You're not a girl, you're mommy!"

- A sign of the times...
"Mommy, who you texting?"

- Said at 2am on 3/12 during your second round of the "ick" that invaded our house:
You sat up from sleep, looked straight at me and said, "Mommy, I need my bucket."
You then proceeded to "grip," which, for some reason (especially since you have pretty good pronunciation), is what you call, "throw up."

On the same day, on the way to the doctor, you held your little bucket in your lap all the way to the doctor, even while you slept.
Big, sweet, so sick boy.

- We were driving a frequently traveled route and passed a newly planted area by the nearly finished fire station. You noticed a large crevice that ran the entire length of the planter.
"Mama... fire station almost finish."
Yes, buddy, you're right.
"Uh, oh... dirt is cracked. Guys need tools to fix it."
What kind of tools do you think they need?
"Ummm... rake and tools."
Do you think they'll need a shovel...? (Silence for almost a mile)
"Mommy... they no use a shovel. Shovel make a big, giant hole!" (Said as though you were thinking that your mama wasn't all that smart afterall!)

- "Mama, this is for boys only."

I know this post is really long... I just don't want to forget the little details as time passes and slowly erases the clarity of exactly how he was as he turned three!

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.)