Still battling the scale... Reconsidering TPN

We saw the GI doctor last week and Gracie was in a fantastic mood, wheeling herself all around the clinic to look at the pictures of all the kids on the walls. She was bossy, focused and insistent that she see every single picture. If I tried to redirect her toward the parking lot elevator, she pushed my hand away and wheeled as fast as she could in the opposite direction. I love when she is like that (even when it’s frustrating)!  Unfortunately, that was the best part of last Tuesday's clinic visit.

Her doc was less than thrilled with the fact that she has lost two more pounds (as am I, obviously, and I didn't need a clinic visit to know that she is, once again, going in the wrong direction). Last year, after the summer of horror, we had her up to 33 pounds. As the space between ends and another round of feeding issues begins (due to abdominal migraines, sinus infections, respiratory infections, gastritis and general intolerance at times), we're fighting to keep Pedialyte in her... calories are not even an option. If we were to hospitalize her every time she is in this state, she would be inpatient more than out.  And, they wouldn't be doing anything for her that we can't do at home - - or that we haven’t already tried numerous times. Needless to say, we are constantly chasing her weight and trying to build back up to her highest weight.  As months pass, the "high" number we are chasing starts to get lower and lower. That is, a year ago she was 33 pounds and after every illness we would do our best to pump extra calories in and try to get her back up to that weight before the next issue set in. Six months ago we were chasing 31 pounds and doing so fairly well. Last Tuesday (the 16th), she was 29.5 pounds and having a great day... two days later, she was down for the count, retching continuously for four days, barely tolerating Pedialyte and barely sleeping. It was a nasty abdominal migraine. I refuse to weigh her until I have five solid days of full feeds back into her little system... but I know she dropped more. Yesterday was the first time in nine days that her intake was over 1,000 calories… her goal is 1300.

Her current weight and constant battle with feedings prompted the GI doctor to suggest another round of home TPN. (If you don't remember how that went last year, you can read more about her summer in the PICU caused by her issues with having a central line by reading all the posts between June, July and August of last year… it wasn’t pretty.) The whole team agreed at the end of our summer of horror that it will be incredibly difficult to get a line in her again, let alone keep her infection free. Every line placed last year became infected no matter where she was... home or hospital. And, the infections (and yeast) were so bad, she was septic four times and in septic shock once. It's not a place any of us want to revisit. Yet, we can't continue on this path of weight loss either. Unfortunately, her body fights so hard and burns so many calories for her heart to function, for her breathing, etc., that when she is well, she often burns more than we can get into her. So, when she is sick, you can imagine how hard her body works to fight infection or pain on top of the regular work it does. 

The issues are deep. In her eight-plus years, we’ve tried every med, every type of feeding and feeding tube, multiple alternative medicine approaches and she has had surgery to repair every possible issue. The problem is, the roots of Gracie’s feeding issues are Central Nervous System (CNS) and Neurological and, at this point, there is nothing left to try.   What will we do? I have no idea. We go back in three months… or sooner if things get any worse. For now, we are continuing to ride it out, and do our best to beef her up in the space between.

Previously Unpublished - Socially Ignorant

The post below was written August 14, 2008... almost exactly three years ago. At the time, I wrote it to express myself, not so much to others, but to get some things off my chest. I was still fairly new at blogging, and wasn't really ready for the blog to be a "heavy" place - - I was still really finding my true voice. I shared this post with my dear friend, Hannah, so I could talk (email, really) about it and deal with some of the frustrations and fears I was having. But, it never saw the light of day on this blog. It's about real things that happen in our everyday life. And, heavy or light doesn't matter to me here... real does.

Yesterday I took the kids to a park that was new to us for a change of scenery and to explore one of the few accessible playgrounds in our area. In addition to the accessible features, it had a splashpad that Gracie, though feeling pretty rough, really enjoyed. She had the freedom to wheel herself through the water spouting from the ground. It was in this, of all places, that for the first time I heard a child (whom I guessed to be right around Gracie's age) use the word "retard" while looking directly at her... and within earshot of my son. Thankfully, Preston did not seem to hear him at all. But, I did. It's one of those moments that will be burned on my brain and heart forever. It was a moment that, for a very brief second, I was so glad that Gracie couldn't hear. And, it instantly brought me back to this previously unpublished post from three years ago. It reminded me that I have to take some serious steps in educating and preparing my son... and myself... for this is only the beginning of a very real and heavy journey of helping Preston cope with (and hopefully, along with his sister, positively influence) the social ignorance in this world.


August 14, 2008

“You sure have your hands full.”

I can't tell you how many times I have heard unsolicited comments over the years - - and especially that one lately... from perfect strangers who really seem to have the need to express their opinion. It's always interesting to me to hear it and the varying tones with which it is spoken.

I am sure I often look quite disheveled in the triple digit heat after having unloaded the big double stroller from the back of our giant, gas guzzling SUV (sorry greenies... I offset our environmental footprint in other ways!), loaded the suction in the bottom (because I can't load it once the kids are in their seats), situated Preston in his seat with a snack and a sippy cup, placed Gracie in her seat (usually followed by a quick suction and a wipe-up of her neck) and then turn off the car (because the air conditioning needs to run until she's out of the car) and grab wallet, keys, etc. Depending on their cooperation level, it can be a long time before I actually leave the parking lot and enter the store. Then I have to shop, pay and reload my little crew. I am sure it's quite a site... and yes, my hands are quite full.

I heard the words from my husband tonight... when he checked in from the Academy, lovingly said with the "I don't know how you do it and thank you for doing it" kind of tone. Yet, too often I hear a hint of pity... sometimes even a "Thank goodness it's you and not me" kind of tone. I don't dwell on these comments... these judgments. They are often said by a person who was caught staring a little too long at my daughter. Make no mistake; I don't ever forget that she has special needs... I carry equipment with me wherever we go that won't let me forget that... but I don't actually think about it - - I just live. And, I really don't remember that she looks different unless I see her reflection in the mirror. When I look directly at her, I just see my sweet daughter.

I should preface by saying that I like to believe that most people, are in general, kindhearted. However, being kindhearted doesn't mean that people aren't also a little ignorant. When Gracie was younger (before she had her trach and the extended hospital stay that altered so much in the way of development for her) we used to try and take her out as much as possible... and for a while (until we grew used to it) it was something we disliked doing. People stared then, too, even without the extra "accessories." Once, in the home section of Macys, a woman backed into a display table and knocked over a crystal vase because she couldn't keep her eyes off our daughter (who was in her car seat and stroller with her g-tube vented to keep her from vomiting). John used to get so furious. Sometimes... rarely, now... we both still do... but it is rare. We've learned to handle it. We know that it comes from a place of social ignorance, not a lack of kindness... not usually. (I have had a complete stranger tell me that Gracie's disabilities are a direct reflection of the sins of her parents and that if we turned ourselves over to God completely, He would heal her. Can you even imagine? Not only do I find that to be a horrific and cruel thing to say - - what kind of God would harm a child to punish the parents? Not any God I can believe in. And if "healing" her were only that simple...)

Most parents look forward play dates at the park - - bonding with other parents while they watch their children play together.  That didn’t happen for us.  The park wasn’t a “fun” place to go; it was only a reminder of what was different in our lives… and a reminder that many people don’t know how to handle themselves or their innocent, teachable children, in the face of a social learning opportunity.  Children were often tugged away when they would make inquiries about Gracie.  They would ask, “What’s that tube?” or “What’s in her neck?” or “Why can’t she walk?”  all of which are innocent questions that were (and are) perfectly logical for a child to ask.  I love it when kids ask me questions… but when their parents don’t give them chance to hear the answers and ask more questions, a wonderful teaching opportunity becomes the wrong lesson learned.  By being discouraged from asking and learning, children are being taught that Gracie, and any other child who is different from them, is scary, weird… or worse.   Perhaps because of their own social ignorance and discomfort, parents who tug their children away from these types of situations, are, in their minds, doing so to “protect” Gracie and me from what they perceive to be an awkward situation.  In fact, what they are actually doing is failing to teach their children crucial lessons about the “differently-abled."  And, by tugging them away or shushing them, they are teaching them to be less accepting and afraid.  Needless to say, there wasn't much socializing happening at the park, but not for lack of effort.  Often, other parents would mutter a quick "hello" in response to my greeting and then quickly avert their eyes. I can remember over two years ago, another mom talked with me for a few minutes and I felt like a "normal mom" at the park for the very first time. I don't say this in self-pity in any way... it's just what our reality was for so long.

When Preston was born, it was such a strange thing to be out with him (and not Gracie) and have people stop to "coo" and "ooh and ah" at him. No one has tripped over themselves and a display table to catch a glimpse of him. No one has ever stopped to tell me that God gave him to me because I could handle him and the challenges that he'll have in life. No one has ever told me that He picked me to be his mom because I am the right person for the job. These are the things that strangers who didn't ignore us would say about Gracie. Such a profound difference... a contradiction that I really can't articulate.

Tuesday I took the kids out and ran a couple of errands - - one of which was to Babies 'R Us. It's the first time I have had both kids in that particular store. It can be an experience to go into a baby store with a disabled child. Some people pay no attention... that's good. Some people are very kind... that's good, too. But a few people (usually expectant parents) will literally look at you with fear in their eyes... pleading with whatever God they believe in to not let "that" happen to them. I can see it in their faces... and I've learned to let it go. But on Tuesday, I think my son sensed something from one of those expectant parents who stared way too long at Gracie. Obviously, at fifteen months, I don't think that he can intellectualize why someone was staring at her (and maybe he thought the woman was looking at him) but whatever he thought about it, he didn't like it. He made this grunting/yelling noise that he only makes when he's mad or frustrated - - and his "stink face" accompanied it. He made the noise three times... and she FINALLY smiled uncomfortably and said, "Wow, you sure have YOUR hands full." I just smiled and said, "Yep, sure do." I sort of wanted to say, "Yep, sure do... and you should continue to stare at us so you can remember what you are witnessing, for I stand before you with my hands entirely full - - full of a love that you can't possibly comprehend... and you should be so lucky." But, of course, I didn't, and that would only be passing judgment on her life, which I obviously know nothing about.

What she made me realize though, is that while I've known for a few months that Preston is keenly aware that his sister is different, he is now sensing things about the reactions of strangers. His awareness will only grow as he does and it is up to John and me to teach him how to respond to others and answer the myriad of questions he will surely have someday. And, I have to always remember that he is keenly aware of my behavior and that to be a good parent and a good example, I have to be dignified, kind and attempt to educate the ignorant... even when all I really want to do is put them in check in a very undignified, unkind way.

LegoLand

(Back-Blogging, Part 7)

On July 19th, we met our dear, long-time friends, the Smalley family, at LegoLand for the day.  They were here on vacation for a few days and let us crash their family adventure.  Gracie played hookie from summer school (the first time she's missed school for fun!!!) and Preston played hookie from swim lessons.  It was such a special treat to see our friends whom we miss tremendously... and an equally big treat to watch our children together again.  
(Another huge thanks to them for the great pics... most of the ones included here were from their camera!)

When we arrived, they had already been going strong for a couple of hours. 
We took the opportunity to snap the only shots of Gracie and Preston together, because once we met up, Preston was all about the big boys, Camden and Cole!
Gracie loved blasting the water and rolling over the splash pads!

Preston loved LegoLand "way more than Disneyland!" (his exact words).

John and Mike
They have been friends for nearly 30 years!

Camden (7.5), Coleman (5.5) and Preston (4)
Maybe in 30 years we will have a picture of them together that matches the one of their daddies above!

So much fun!

Cole and Preston having a blast on the racetrack

Gracie looking on as the boys zipped around the track

Proud recipients of their drivers' licenses!

The three big boys had a blast together... and the little one, Sam, did his best to keep up!

Gracie with "Uncle Mike"
As per her usual socializing, she requested to travel from lap to lap, hanging out with Mike, Natalie, Mike's mom, Randie, and stepdad, Mike.  Needless to say, she thoroughly enjoyed all the love she got during lunch!

We rarely buy the souvenir pics that are taken at amusement parks. 
That being said, one look at the joy on their faces (bummed Natalie's is cut off), and John had to buy it!

Happiness - - the first photo of all six of our kids together!
Cole (5.5), Preston (4), Cam (7.5), Sam (15 mos), Gracie (8) and Cora (10)

Party of Ten!

Perpetual Motion

It's pretty obvious that our little man is always on the move... always and all ways! Whether he's riding his bike next to John on his daily run, trying tricks on his scooter (I try not to watch!), practicing his footwork for his soccer team next year (his words, not mine!) or schooling me in some street hockey, he is constantly moving... enough so that he has to be reminded that the furniture is neither a jungle gym, nor a trampoline!   
His latest obsession is the Slip 'n' Slide!  Thanks Hannah and Viv for the great idea!  :-)

This was his very first run... full speed ahead! 
It took a few reminders to go on his tummy before he finally got the hang of it.
A slight bonk on the head and having me read the rules on the box also helped convinced him that going on his knees was not a good idea!

He thinks he is a B boy... literally... and has now mastered taking a couple "handsteps" with his feet in the air!

He is taking lessons twice a week and improving quickly. 
He still, however, insists on trying to negotiate with his teacher... ugh!  We are working on doing what is asked of him!

He shoots...

He scores!!!

June Fun (Back-Blogging, Part 6)

So July is already over and I am just now blogging about June.  Still so behind here... still fighting with our laptop.  June was great in the middle (especially the two week break after the regular school year ended) but, for Gracie, it brought a rough beginning and a really tough last week.  Unfortunately, she missed the entire first week of summer school (and ended up missing several more days over the course of the remaining four weeks).

As always, we continue to enjoy the spaces between and are doing our best to not let Preston be too affected by the bad spaces.  Having 6-12 hours of nursing help between Friday and Sunday while John works has helped in that area tremendously.  I can take Preston to do things (like go to parties he would have otherwise missed) and know that Gracie is happy, well-cared for and downright spoiled by her nurse, Zina.

I didn't take many pictures in June, but managed to get a few that make me smile, all for very different reasons.

I love this one of P... so serious as he puts on his helmet and makes sure he doesn't pinch himself!
And, I love this one of my joyful girl... few things make her happier than swinging on a beautiful day at the park.

Just hanging out... literally.
There are several interesting ways that Gracie likes to chill... this is one of them. 
She will perch herself up there and hang out for a while.  She also likes to balance precariously on the arm of the couch (which I don't allow, as I am afraid she'll roll off and crash to the floor, but often find her that way after walking away for less than a minute).  For a kiddo who can't balance enough to walk independently, her core strength sure does allow her body to do some pretty amazing things!

Go Fly A Kite!
On a slightly windy Sunday, we went with our neighborhood friends over to the school and flew kites.
So much fun!

I ♥ them!

My little biker babe! 
When she feels like it, she can ride the trike all over the place!  (Again, when she feels like it!)

Preston and I on our date to his preschool's graduation party.
This one makes me laugh because, as I clicked our picture (to remember the great fun we had), one of the balloons he was holding popped as a result of touching the grass.  He was absolutely hysterical and went on a rant for 30 minutes about how he didn't like the balloon that was left, that he never wanted to come back to the place where the party was and how he didn't have any fun at all.  Drama king!!!
The next morning, he only talked about how much fun the "graduation ball" was. 

Moments in May (Back-Blogging, Part 5)

May continued to be a tough month health-wise, not just for Gracie, but for all of us... bronchitis, sinusitus, etc. No bueno. The ick did not, however, prevent us from enjoying ourselves in the spaces between!  Aside from Preston's birthday, here are some of my favorite moments in May...

May 1st
Hold the phone... Gracie has clothes on inside the house!!!!
We were headed to our community's annual festival on a beautiful, sunny day.
Love this - - even with Preston's "cheese" smile.  In the one with a real smile, Gracie wasn't smiling.  Figures!
(For the record, she had her shoes off and was working on her shirt by the time I got her wheelchair out!)

Later that day, cooling off on the back patio playing Zoodles on Mommy's phone. 
Though the photo obviously doesn't capture it, Preston was explaining all kinds of games to Gracie.
They hung out like that for about 45 minutes... so sweet.

May 2nd
More beautiful weather made for an ideal "Mommy & Son" beach date while Gracie was at school.
I love that my little man loves the ocean as much as I do.

May 3rd
Both in outfits of their own choosing (she does have on a diaper, FYI!),
the kids enjoyed another warm evening playing in the backyard! 
Gracie loves to go fast and Preston loves to push her!

May 5th
With the Jacaranda trees in full-bloom (which make me so very happy),
Preston and I spent a good part of the afternoon at the park, lunching and playing barefoot soccer. 
He knows I love these trees and points them out to me anywhere he spots them.

I love looking at his hands in these pictures... he is concentrating all the way through his fingertips!

May 14th
Day two of an eleven-day stretch of "space between" for Gracie. 
This little girl makes me so happy... and never ceases to amaze me. 
After a solid week of feeling awful and barely tolerating one quarter of her daily caloric need,
she wanted up so she could cruise the kitchen and "cook" with mommy. 
Since "cook" is a two-handed sign, it was interesting watching her motor-plan
to execute the sign while maintaining balance.
The solution:  forehead on the counter to stabilize herself while signing.

May 21st
They were hanging out... and as I started to take a picture of their cuteness, Gracie took a pretty decent tug on Preston's hair... not with the intent of hurting him, of course, but it did.

Preston sweetly explaining to Gracie that she has to be gentle.
Ha!  Pot... meet Kettle!!



May 22nd

Miss Gracie likes herself some tight, confined spaces.  And, while she loves playing on the trampoline, on this day, she played under it for hours, literally.  We kept getting her out and she kept going back.  She was obviously seeking that type of environment, so we let her stay, knowing that she is fully aware of what her body needs.   Every once in a while, Preston would exchange her toys, but other than that, she played alone and was happy as can be, and happy is the whole point, isn't it? 



Happy "4" to my big boy (Back-Blogging, part 4)

Dear Preston,

For months now you've been talking about being "almost four."  You're always saying, "Four kids can do this..." - - meaning kids who are four can do the very thing I just told you that you're too little for (mostly this has to do with daredevil-type activities, toys for big(ger) boys and watching certain shows that you know about, but are not allowed to watch).  Anyway, you are the big "4" now... and after all that anticipation... I believe you actually did feel different when you woke up on May 9th.  And though you already are wanting to be bigger (slow down, Buddy, please!), in general, you think being four is great - - even when I shoot down the things you're still too little not big enough for.

Mommy is sorry she didn't write to you on your actual birthday (which is my tradition), but my computer just wasn't cooperating (of which you are well aware since you have been playing on it when it just randomly shuts down).

Some general stats about you on May 9th:
- You are 40.5" tall
- You weigh 36.5 pounds
- You wear a size 11 (or 11 1/2) shoe
- You go through an average of a pair of pants a month... wearing holes in your knees faster than I can blink.  I am not sure whether to be happy it's finally "shorts weather" or not... as I wonder if your knees will take the same beating as your pants!
- Quite often, you look a bit like a leopard from the knees down.  Why...?  Because you are so active and so fearless that you bonk yourself all the time.  I cannot get over how many bumps, bruises and scrapes your little knees and shins can hold at a time. 

Some things about you at four:
- You love family time and you often request "family hugs" where we all squeeze together.  Whether it's sitting at the table, cuddling on the couch, wrestling on the family room floor, or driving in the car... you always announce your pleasure in the four of us being together.  And, when you do, you often mention that we are just missing Sophie.  You say, "Sophie isn't here, she is in Heaven."  And then you remind us (because we have told you) that she is still our family.   While it brings tears to our eyes every time you mention her, we love that you loved our doggie so much.  Sweet boy.

- You love to help (most of the time!).  You dust, vacuum, take out and bring in the trash cans, help unload the car after Costco runs, help restock supplies we get from the garage and do a pretty good job of picking up after yourself.  You also like to help Gracie - - which is nothing new - - though sometimes have to be reminded that some things are for Mommy and Daddy to help her with and some things she can do herself.  You also love helping in the kitchen... unloading the dishwasher, preparing meals, etc.  And, I regularly freak out at the fact that you will open the fridge and stand there (much like your daddy) deciding what you want to have... makes you seem so big.
- You are quite the negotiator.  You'll say, "I have an idea..." and it will be followed with an agenda that mostly favors your wants and needs, but throws in just enough of what I've said must be done and almost always includes something that will also make your sister happy.  Your ideas are often followed up with, "How does my deal sound?" or "Does that sound like a plan to you?"  You are also negotiating with your swimming teacher... she'll ask you to do something three times and you'll try to get her down to two.  While I want you to do what you're being asked (by all of us), I am glad that you have a mind of your own and try to voice your opinion... even if we shoot you down!

- You continue to have exceptional manners - - you even answer the phone a lot now, saying, "Swann residence" and, "Just a moment, please."  You have gotten a little shier than you were at three - - when strangers say hello, you aren't as quick to answer in your normal, bubbly way.  This is good... stranger danger is an important awareness... but it makes mommy a bit sad that you've grown enough to have reached this stage.  This does not, however, apply to other children.   You are still very quick to make friends at the park and, in general, play great with others. 

- You're bright, athletic, funny, silly, kind and compassionate.  You are, by all measures, a happy kid... and that's so important.

- You are getting quite good at writing your letters and regularly try to spell out words and write them or even make up your own words and definitions.  You can read a couple levels of BOB books now, but don't like doing it for me... which frustrates me to no end, as does the fact that you'll act as though you can't do certain things, such as read words that I know you already know.  Like your sister, you are much better at doing things when left alone (that is, when you think I am not watching), though you do it for different reasons than she does.  I have finally opted to leave out your pads of writing and drawing paper and pens/pencils (my general rule is to put things away when finished, so this goes against that) because I find that if you have it set-up and accessible all the time, you'll make the decision to sit down and write/draw/color/scribble/make words on your own several times throughout the day.   Conversely, you will practice anything athletic until you're blue in the face... regardless of who is watching... and rarely act as though you can't do something.  

- You LOVE spending time with your daddy.  By the time his four-day stretch of 16 hour days is over, you are so excited you cannot be contained.  Seeing you two together warms my heart to no end.  You are his little side-kick and he is your everything. 

- And, I mustn't forget... you love to have your feet massaged! At night, if you have trouble falling asleep, you request a foot massage (sometimes you plop yourself on the couch and place your feet in my lap and wiggle them without even asking) and within minutes, you're knocked out! It's too funny... and I love that you know what you need!

You are now four years, one month and two weeks old.  You are:
- Wearing a size 12 shoe in most brands
- Getting gutsy with the wheelie bar on your "big boy" scooter

- Riding a bike without training wheels and doing so with great ease

- Taking swim lessons twice a week
- Going to start ice-skating lessons soon
- Wanting to play soccer, baseball, basketball, take karate, take gymnastics and play hockey (pretty much everything there is to play/do and you are interested)
- Often speaking in a voice that is changing from the little boy sound into the big boy sound... with a big boy attitude (that sometimes is good and sometimes isn't!) and an ever-increasing vocabulary that just blows me away.   Last night at dinner you slayed daddy and me by doing the following:

"Let's all hold hands,"  you said. We did. 
You bowed your head and said,

"Dear God,
Thank you for this lovely dinner. 
And help our sister get better.
We love you. 
In Jesus' name,
Amen"

You, my sweet boy, are wonderful in so many ways.
I love you, and all your "four-ness," with my whole heart.
Mommy

Celebrate Four! (Back-Blogging, Part 3)

Catherine (our friend who also happens to be a talented photographer) took this beautiful shot of Preston's hands holding his "four" balloons after his party in June.
(Note: Due to my computer issues, I am not able to upload the gorgeous, high resolution quality photos. Catherine's work is even more stunning and vibrant in the proper, high resolution. Click her link to see her amazing work... then HIRE her!!!)

Preston turned four back in May... and, though we celebrated that day as a family, it was a "divide and conquer" kind of day.  Gracie had to stay home (from school and birthday fun) due to getting over a nasty sinus infection that resulted in a pretty bad airway bleed.  So, I took her to a seemingly endless pulmonolgy appointment while John and Preston took off with friends.

They hit the park and then went miniature golfing... a cute little "birthday date."

Addie and the birthday boy... striking a seriously cute pose!

That evening, he made his big birthday wish over a dinosaur covered cake.
(Not homemade this year, though I don't think he even noticed!)

He loved opening his gifts and was so excited that Gracie got him Madagascar 2. 
He thanked her a dozen times!

I love that he is so excited still over every single thing he opens. That being said, he couldn't have been more over-the-moon-happy when he opened his "big boy" razor scooter! (See his face... above, top left!)  The "big boy" scooter has two-wheels with a wheelie bar and foot brake (insert Mommy's heart attack here), as opposed to the "little boy scooter" he had been riding with a wide board and three wheels. While he loved that first scooter and it served a very good purpose from age 2 1/2 til now, it has been permanently side-lined and is already collecting dust until it gets sent to "Baby Jack," his cousin, who gets his hand-me-downs (or anything Preston feels he has outgrown, regardless of whether Jack wants or needs it!).

Due to scheduling conflicts - - the most significant being that John would have missed it - -Preston's party with his friends was moved from May to June 5th. It worked out great for him... he had two celebrations, two months in a row. He did, however, ask what his party was going to be in July, so we quickly set him straight!

Sadly, when the party day actually arrived, Gracie had a fever and ended up missing the fun. We were all so sad, but grateful that our new nurse, Zina, (yes, we started nursing care again, 10-16 hours each week, though Gracie is eligible for 112 hours) had worked a few days with us and we felt comfortable leaving Gracie for a couple of hours (especially since we were barely two miles from home and had our phones with us). Had Zina not been there, one of us would have missed seeing Preston have so much fun with his friends on all the gymnastics equipment at Kidnastics - - the place where he used to take classes (and wants to, again!).



FUN! FUN! FUN!
(And, for those of you who know Reuben... that's him, bottom row, third picture... doing the hula hoop like a little pro!)



After all that play, the kids were so quiet eating their pizza... until they had the sugar rush from cake!
Check out the gender-division at the table... all the boys on one side, all the girls on the other.  Too funny!

(It was hard missing Gracie... all of us did... but she slept almost the whole time we were gone and I kept reminding myself that this was the perfect example of why I need to have some extra help. As much as it can feel like a burden and an invasion of privacy at times, it truly allows me to be a better mom to each of my children.)

Another shot from Catherine... I just LOVE this!

So far, SO GREAT!!!

(No... I don't mean keeping up with my back-blogging! I have determined that uploading photos is still causing my laptop to crash, so it's going to be a very slow process in playing catch-up here, but I will do it, as this is the only form of journaling/scrapbooking I do to create memory keepsakes for our family.
Now... onto the photo-less GREAT...!!!)

Last year, the summer was kicked off with Gracie's first (of five) admissions to the hospital - - the start of what I call "the summer of horror."  In fact, Gracie missed the last two days of school.

THIS year, she attended the entire last week of school and... AND... to kick off the first week of vacation, she has been a busy girl! A great weekend with lots of self-initiated physical activity, including lots of random attempts to pull to a stand (when I'm not looking... scary) and take very unbalanced steps (also scary) between things (forgetting to use her hands... scarier) which peaked with her cruising the hallway all by herself.

And then there was Monday...
We have made some changes to her PT regimen and are giving her more of a boot-camp style session. Actual exercises, with repetitions and onto the next activity - - all of this to see if we can add strength and keep her interested and motivated.  So, on Monday, her PT jumped right in. Gracie used her walker and walked from OT over to PT, got on the Total Gym (yes... you read that right... think Chuck Norris and Christie Brinkley's infomerical!) and proceeded to do some inclined leg presses.  She needed some help remembering the muscle motion for the first five reps... then did 15 with no help at all!  She took a break and did another ten with some assistance toward the end.  Then she did reps of wall squats (with balance assistance and movement queues) with a squishy ball between her knees. Then she walked over to the tricycle. (Gracie has a trike at home that she "rides" and has had it for years. She can pedal, steer, etc., but often only does it in short spurts. School purchased one for her to use at recess, etc., but it has been reported that she doesn't really show any interest, which has always perplexed me.) Anyway, back to Monday. Gracie got onto the trike (with help, of course) and proceeded to pedal her little self all the way around the therapy unit!!!  She corrected her body position whenever necessary and kept those feet on the pedals the entire time. If she slipped, she got herself back into position and kept pedalling!  Then, after riding, she walked all the way out to her wheelchair.  Needless to say, I was squealing with delight! Laural had intended to add a goal about riding the trike... instead it's going to be the reward! My girl blew-up PT on Monday and I was so proud! (Might I add that all of this was following a lengthy Neurology appointment and a half-hour of OT!!!)

Not to be outdone... Tuesday was Preston's day! 
(Last year, because of the summer of horror, Preston's swim lessons were canceled.  With all that was going on with Gracie, we just couldn't make it happen logistically.  The summer before also had logistical challenges, so he just started last week for the very first time.)

Tuesday morning, Preston had his third swim lesson.  When he started last week (yes, there are pics... but sadly, I can't get them on here!), it went great.  John and I both got to watch and it was so much fun seeing our fearless little man step up to the challenge.  Monday was his second lesson and it was a small disaster, riddled with tears, clinginess and borderline hysterics... what we would have expected on the first lesson.  He rallied for the middle of the session, but I was fearful that our inability to get him started younger was going to cause permanent damage.  Tuesday, daddy took him and he rocked it!   He came running through the front door with his Level 1 bracelet and said, "Mommy, I passed Level 1 and got three rings off the stairs with my whole head in the water!"  Phew!!!  I was so proud of him!

Then, they took off for the park.  John was going to run there and Preston ride his scooter, or so I thought.  Preston rode his bike... all the way to the park and all the way home... without training wheels!!!  At the age of four years, one month and five days, he's officially without training wheels on a 14-inch bike.  Such a big day for him!  That evening, we went for a walk as a family and Preston rode his bike... through gravel and big rocks, over grass, over small curbs... he tried skidding... he took his hands off the handlebars for a split second... and I... I kept checking my pulse!  I just can't believe how big my little man is.  Sigh. 

So far, this summer is SO GREAT!
Can't wait to see what my kids do next!!!