Saturday, March 27, 2010

Marching On

Our month was all laid out. Plans were made, and we were diligently checking things off of the "to-do" list. Then, suddenly, out of the blue...WHAM. What began as a little bit of a stuffy nose, turned into a cough, then a fever, then a couple of trips to the pediatrician, two days called into work, a chest x-ray, and a diagnosis.

Pneumonia. Again.

Eden is very sick, but for now we have been weathering it at home. She is on her third day of steroid and antibiotics and I think things are improving. Her fever has broken, but her cough still sounds scary-bad, she threw up all of her medicine all over her bed last night, and now she has an upset stomach and diarrhea from the antibiotic. On top of being generally sick and miserable, the effects of the steroid are taking a toll too. It seems like someone sneaked into our house and replaced our sweet, funny, easy-going girl with someone who is mean, sassy, and rude. We are trying to cut her some slack and hoping that she will Get Well Soon so we can have our sweet girl back.

Holland has a stuffy nose that started yesterday, so it seems pretty likely that she will be coughing soon. This cough is really bad, and if Holland does get it we could be in trouble. At least Holl is on Flovent (preventative low-dose inhaled steroid) and is getting bigger and stronger all the time, so we just have to hope for the hospitals!

We have been really lucky to have had a very healthy winter with no major glitches. This time of year seems to sneak up on us with some kind of illness or another...right around the time we are breathing a sigh of relief for making it through the worst of cold and flu season!

Our lives have been forever impacted by the long-term effects of prematurity, and this recent sickness serves to once again remind us why we support the March of Dimes and participate in March for Babies. As if we needed reminding.

The walk is quickly approaching, and we would greatly appreciate your support for Team Holland and Eden. Holland and Eden are alive and enjoying life today thanks, in part, to advances in neonatal medicine made possibly by the March of Dimes. It is our hope that with continued research into causes and prevention of pre-term labor, as well as improved treatment options for those born too soon, fewer babies will face the long-term consequences of such an early birth.

With your help, Team Holland and Eden has already raised over $16,000 for the March of Dimes. We hope to continue our tradition of being one of the top family teams in our region and we are setting our sights high! Please visit my personal page to make a donation and to assist me in achieving my goal of helping to save babies!

If you are interested in walking with us on April 24th, please visit our team page and sign up as a walker. If each person walking would solicit a least $100.00 in donations we would be able to meet our goal in no time!

If you are planning to walk with us this year please let me know asap so I can start planning out our team shirts. Eden really thinks we should be the Pink Team this year, but Daddy nixed that idea:) Instead we are thinking about kelly green.

Thank you so much for you support in our fundraising efforts over the years, and thank you in advance for supporting Team Holland and Eden as we walk this year!

Wednesday, March 24, 2010

Half Full

Eden's assessment for the conductive education program in Grand Rapids went really well and we have been accepted into their summer program. The program director evaluated Eden and seemed to be extremely impressed by our little gal. She was effusive in her compliments regarding Eden's cuteness and reiterated many times how "extremely bright" she is...which of course, made my mom heart happy. She seemed very optimistic about Eden being the perfect candidate for their program and seemed confident that she would make great strides in meeting some of her physical milestones over the 4 weeks that we will be there. Our hope is that she will make progress with standing and bearing weight on her legs, and perhaps start working toward a goal of pushing a regular walker with better form. We also hoping that Eden will learn to take more responsibility for her own body and start helping us with more of her basic self-care, such as transfers between equipment and assisting with dressing and feeding.

The program director said that this program was actually designed specifically for kids like Eden. She had some interesting comments about Eden's type of CP. Eden was initially diagnosed with spastic diplegia (high tone in lower extremities). Eventually that diagnosis was changed to spastic quadriplegia (high tone affecting all four limbs). We know that Eden is not "typical" for a child with spastic quad CP, as her spasticity (high tone) is actually very mild and fluctuates, whereas her trunk tone is quite low (or floppy...called hypotonia). So this person, who has worked with many, many kids with CP, thinks Eden's CP looks more like dystonia or athetoid CP with fluctuating tone. In the end, it doesn't matter so much to me anymore what we call it. I do however, think that a lot of what she said makes sense in terms of Eden's difficulties being much more related to involuntary movements and motor planning issues rather than just to high or low muscle tone. She says that we really need to focus now on teaching Eden to slow down, pay attention to her body, and pull it all together. I think this is spot on.

Eden is excited about the program and I think she is really going to enjoy it. I am not just looking forward to her making some gains in her gross motor skills. I am also really looking forward to her being able to meet and make friends with some other child who have physical challenges. We are lucky to have a few friends with CP in our community, and this has been invaluable in helping us teach Eden about disability and what it means for her and others. However, Eden spends the vast majority of her life surrounded by adults and children who do things easily and don't face the same physical challenges that she does. I think it will be a great experience for her to see and understand that she is not not the only one always needing help. She is not alone.

The Conductive Learning Center is a little over 2 hours from our house, so we will be packing up and living at either Ronald McDonald House (most likely option due to cost) or a hotel suite (more comfortable but pricier) for 4 weeks in July-August. John is looking into working remotely, and the plan is that he will come with us and work for at least part of the time. I am investigating some options for a summer camp for Holland at the same time, and one of my blog readers (whose blog I also read regularly) has given me some really great suggestions that I think Holland will love...although she has already made it clear that she wants to do conductive ed with Eden!

There are, of course, some downsides. One is certainly the cost. Between the cost of the program, living expenses, travel expenses, and a summer option for Holland we are looking at several thousand dollars. We will use our tax return, as well as some of our savings to fund this venture, and we will have to forgo any other summer vacations, but I am hopeful that it will be worth it. It will be an adventure! Another downside is the fact that Eden will get more benefit from the program if we do it more than once a year. If we have great success this summer and decide we want to pursue it again we will definitely have to look into some fundraising options.

As an aside, in Hungary (where the program was developed) this program is FREE. In Germany it is fully funded through insurance. In the US...nothing. I guess that Medicaid used to give a $500 stipend to help families with the cost, but that ended this year due to budget cuts. So instead, we pay more for our Medicaid and get less (diapers are no longer covered in MI as well). I'll just stop there. Don't even get me started. Pfffft.

In other news...we had a blast in Columbus and thought They Might Be Giants totally rocked. The girls were giddy with excitement when we got to the hotel, and they literally screamed and squealed when we pulled into the parking lot. The hotel was really nice and we had a super-fun time swimming in the pool. My kids are literally fish. Except that while they may think they can swim, they really can't! They were skinny little balls of energy and joy the whole time we were at the pool and they had, in their words, "a total blast."

The downside (geez, there always is one, isn't there?), is that we did not sit together. We were clueless about the time change and after a confusing morning we (luckily) finally figured it out and arrived at the show with less than a half hour to spare. Parking was a nightmare and my stress level was through the roof by the time we got to the venue. I asked at the ticket counter and was informed that the show was completely sold out, even in the accessible area. And yes, it gets worse.

John sat with Eden in accessible seating. There were 6 seats. The other 4 seats were occupied by a family of 4. And no one in their party had a disability/used a wheelchair or walker/or appeared in any way to need wheelchair accessible seating. Big Sigh. Now John, to his credit, is a much more laid back guy than I am. It really didn't bother him and he just let it roll off his back. If I had been down there I most certainly would have said something...politely and nonconfrontationally for sure, but I would have made it happen, even if just to ask if they would hold one of their small children in their lap so I could have one seat in which to hold Holland in my lap. It wouldn't have been a big deal. But...John didn't see it as necessary and just had a good time enjoying the show with Eden.

I made the most of it in the mezzanine with Holland. Everyone had fun. The girls loved it and didn't seem to mind the arrangement at all. I was the only one with an issue so I made a big effort not to get all stressed out (but I was) and to let myself relax and go with the flow. During the encore I noticed the family seated in (what should have been) our accessible seats had left so Holl and I rushed down to catch the last song with Dad and E.

Then...on the way out, as we were TRYING to make our way back to our very crappy parking location, Eden ran Holland over with her powerchair, Holland fell and hit the floor with her glasses which embedded into the side of her face, dangerously close to the eye that she was about to have surgery on. I should mention that they were both mesmerized by the 3 escalators in the atrium and were staring at them as we passed by. So neither was paying any attention to what they were doing...Holland aimlessly walked directly into Eden's wheel as Eden aimlessly drove her wheelchair. I saw it happening at the exact moment that it was too late to do anything about it. So the whole thing ended with me sitting on the floor of the venue lobby with a sobbing Holland in my arms assessing the damage. She ended up with a nice bruise and bloody puncture wound on her left temple. Fortunately it is healing nicely.

This whole experience was a nice, fresh dose of reality for me, realizing that as much as I sometimes like to think I DO, I don't and CAN'T always control everything and I don't always have it all together. There are some battles that are worth fighting, and some that aren't. Sometimes you have to stop worrying about changing the world, and instead focus on what is most important...enjoying the experience for what it is and being in the moment with your kids.

These amazing kids have really taught me so much. It is much too easy to get caught up in the "bad stuff". I could easily choose to remember the negatives of this whole experience. We were late. Parking sucked. We didn't get to sit together. The people sitting is our seats didn't even need accessible seating!! Nobody seemed to realize this was unacceptable! My daughter ran over her sister with her WHEELCHAIR. My daughter needs a wheelchair...

But if you were to ask Holland and Eden about the show...they would tell you it was GREAT! They would say that their favorite part was the shooting star song when the disco ball made it look like there were stars everywhere! Or they would tell you about the avatar puppets that were SO HILARIOUS! Or about how many times the CONFETTI sprayed everywhere! They would tell you that they got to see John and John in real life and it was SO COOL! And they played Mom's favorite 12 Crazy Monkeys song! And Dad's favorite High 5! Holland danced in the aisle. Eden sang along and reached as high as she could to catch the confetti. It was great. It really was.

And that's what I am going to choose to remember.

I am so lucky.

My kids are constantly reminding me that the glass is half full.


After a mini-meltdown on my part the night before (I've been under a little bit of stress lately) where I convinced myself that something really, really terrible was about to happen, I am happy to report that Holland's eye surgery went great. Better than expected even. The inside muscle on her left eye had, in fact, come detached at some point following her last surgery. This explains why her eye had gone from turning IN, to looking really good post-surgery, to turning WAY out. The surgeon was able to locate the muscle more easily than he anticipated, and was able to reattach it where it was supposed to be. He did NOT have to move the outside muscle at all as he thought he might. This surgery was done at a different hospital (at least different for Holland) and I thought they did a good job with pain control and anti-nausea drugs because Holland actually had an easier time in recovery than she has in the past. She was pretty tired that afternoon, but after a nap was up again playing with her sis. The next morning she woke up pretty sore, but we had no problem controlling the pain with motrin. The morning after that (2 days post surgery) she proclaimed that she was "fine" and didn't need any more medicine.

I was a little concerned the first couple of days that her eye was turning in slightly again, but after a week I think it looks really great and probably the best it ever has. She had her post-op appointment yesterday and her eye doctor said, "I think she has had her last eye surgery!"

Let's just hope that muscle stays put this time!

If you ask Holland how the surgery went she'll say it was "GREAT!" She'll tell you that she loves her new eye doctor because he has Thomas in the DVD player at his office, and she loves the new hospital where she had this surgery because she got to watch TV in recovery and they gave her KID POP to drink!

My kids have such a way with always looking on the bright side of life.

Here is a before pic of Holland where you can see her left eye turning out:

And this is a picture taken the evening of her surgery:

Isn't she gorgeous?

Monday, March 08, 2010

In Like a Lion...

I kinda like March. For the most part, it's still cold and snowy and gray outside, but at least March holds the promise of spring. The sun was shining today and the temps have been above freezing all week. The snow is melting and I heard the birds chirping this morning when I woke up. Spring is coming and we are ready for it.

This March, however, is going to be very busy around our place. So much is happening at once. I have had an anxious feeling in my chest this week, always feeling like I must be forgetting something.

Last week we had my dad's birthday dinner on Saturday and John was gone Wed through Sat evenings last week to hang out listening to music at the Hamtramck Blowout. We got a babysitter on Friday night and I went with him.

This week is crazy. John and I are both working on Monday and Tuesday, then off for the rest of the week. On Wednesday we are taking Eden for an assessment at the Conductive Learning Center in Grand Rapids. We have applied and are hoping to be accepted into their summer camp in July. Very excited about this.

On Thursday we have a pre-op appointment for Holland, and another eye muscle surgery scheduled at the university hospital on March 16. In a nutshell...the new eye doctor suspects that the inside muscle on her left eye has slipped and that is why it is now turning out. This surgery will be more complicated than previous surgeries and will require that a second surgeon is present. They will also have to check the outside muscle to make sure that it hasn't gotten too tight. If it has it will need to be released as well. Sigh. I have talked to her previous eye doctor (who is on vacation in Mexico), and she also feels it is the right thing to do. I feel like getting another opinion will only serve to muddy the waters, so we are making the decision to go ahead with this surgery based on the information available to us with Holland's best interest at heart. But I'm not happy about it.

Thursday is also John's birthday, so we'll try to throw in a little fun too:)

Friday is PT, and a pre-IEP meeting at school for Eden. Kindergarten registration is this week, and the team is going to meet to make sure we have all of our bases covered before the official IEP meeting in May. We want to make sure we are prepared for kindergarten in September (gasp).

Saturday the 13th we are taking a mini-vacation to the beautiful city of Columbus, Ohio. We are staying at a hotel with a POOL(!) and going to see one of our favorite bands, They Might Be Giants perform their kids songs. Holland and Eden love TMBG, and quite honestly John and I do too! We are all very excited about the show, but Eden seems to be most excited about the hotel pool. Only downer...we have to sit separate at the show because Eden is only allowed one companion in the wheelchair accessible seating area. I called to voice my complaint, and was told to arrive early the day of the show. If there are seats still available in the accessible area we can sit together. I am trying not to get my panties in a bunch about this...but I can't help but think about things like, "what if I was a single parent?" I wouldn't be able to sit with my two kids? Or, "what if John and I only had Eden?" We wouldn't be able to sit together with our kid? I can understand that they don't have room for large groups of non-disabled people to sit in the accessible area. But a family of FOUR, at a KIDS show??? Sheesh.

We'll get home on Sunday night, take Monday to recuperate, and Tuesday is Holl's surgery.'s work on Wednesday (St. Patrick's Day), work-related conference in Lansing on Friday, a playdate with out-of-town friends the following week, a Tegan and Sara concert, an appointment to do our taxes, and John's turn to volunteer at preschool...all before the end of the month. On top of all that I have this sudden drive to start thinking about selling our house (likely for less than we bought it for...ugh), and have appointments to look at a few places in the next couple of weeks (more on that later).


At least March will be out like a lamb. Right?

Friday, March 05, 2010

Flashback Friday

OMG I can't believe how flippin' cute they were!!! LOL