Sunday, April 27, 2008

Thank You!

Monday, April 21, 2008

March for Babies!

Thank you SO MUCH to all of you who have already donated to support Team Holland and Eden as we walk to raise money for the March of Dimes! You guys ROCK!

The walk is just FIVE days away, and we've still got a long way to go to reach our goal. So please, help us out... Not only would it make ME so happy, your donation will be used by the March of Dimes to help fund research targeted at prevention of premature birth, and toward improving the care and long term outcomes for premature babies in the future.

If you are interested in joining us, you can sign up at the donation page. Details are available there as well, in regards to date, time, and place. If you are a blog reader, please stop by and introduce yourself! You won't be able to miss us:) We love meeting our preemie friends!

Life of the Party

Prematurity sucks. That's the bottom line. I wonder sometimes if I will ever get over it. I want to. I really do. But the fact of the matter is that I am faced with constant reminders of their traumatic birth.

orthotics...eye patches...reflux medication...breathing treatments...vomit...poor feeding...poor weight gain...IEPs...physical therapy...occupational therapy...cochlear implant equipment and batteries...low muscle tone...high muscle tone...walker...wheelchairs...appointments and opinions.

It's hard to relax and enjoy life with your family when there is so much to worry about. Sometimes I feel like it is getting better. Then I have days like I had this weekend that remind me how far from "normal" my life truly is.

I went to a family party. It was my beautiful niece's 2nd birthday, and my sister had us over with a group of her neighborhood friends. It's not that it wasn't a great party, and it wasn't that I didn't have a good time. I did. It's just that, for whatever reason, it hit me how much our lives are different from everyone else's.

The other parents sat around in the front yard and had a few beers. The kids ran off in different directions, to play on their bikes and scooters and cars, to climb on the jungle gym. You know, the usual. Some moms helped their kids get a plate of food, then helped themselves while their kids sat and ate.

That's what I want. I want to be one of those moms. I want to sit on the bench at the park chatting with the neighborhood moms while my kids run and climb and slide. I want to hand them a hot dog or an ice cream cone to eat while I finish my plate. I want to help the women preparing food and cleaning up in the kitchen while the kids play in the other room. I miss those simple things.

Instead I hold Holland's hand as she climbs the stairs to the deck over and over. John and I take turns pushing them on the swings, helping them climb on the jungle gym. I sit on the floor of the play room handing Eden the toys she cannot reach, and making sure none of the other kids trip over her as she lays on the floor. I strap her chair onto the car so she can have a turn taking a ride. I make their plates, and John and I sit, each with one, to feed them every single bite long after everyone else is done eating. He cleans up Eden's vomit and changes her clothes. I drive home listening to Holland coughing, just wishing we were there already so she could have a treatment. We take turns giving breathing treatments every few hours through the night, wondering if we need to make yet another trip to the ER. The same thing happens the following night, then Eden's nose starts running too. It never ends.

It's very isolating, this life. I am surrounded by the most incredible, supportive and loving family and friends, but still I feel lonely and often disconnected. I am sure some of it is my doing...maybe most of it. But I'm am also sure, to a certain extent, that it just comes with the territory.

Friday, April 11, 2008

The Possibilities are Endless

Eden has a lot going on lately. You know, a day in the life of a 3 1/2 year old (who happens to have Cerebral Palsy)...busy, busy, busy. This morning we had our first meeting with the multidisciplinary clinic at the Program for Exceptional Families in our area. Eden's physical medicine doctor oversees this program, and we decided to give it a go. The appointment lasted for over three hours, as we rotated through five teams of specialists, including the doctor, nurse, PT, OT, speech therapist, orthotist, equipment supplier, and social worker. There are usually a neuropsychologist and a nutritionist there as well, but they were out today.

Let me first say that I was (not unusually) anxious about this appointment in the days leading up to it. Eden has NOT been eating great for the past two months. She has been sick A LOT, and has had an accompanying and predictable increase in reflux, vomiting, and general grumpiness about eating. Her weight has leveled off since the end of January, losing a little in February, then gaining it back, then kinda hovering up and down through March. I started ruminating about weight gain and eating and reflux this past week, and was convinced that the doctor would mention the dreaded t-word. BUT, I can happily and with great relief report that it did not come up. She has gained about 3 pounds since her last visit 6 months ago, as well as a couple of inches in length. She is on the chart in length for a "normal" 3-year-old, and is getting *closer* in weight. Her BMI is also *closer* than ever before to "normal." If you chart her on the CP growth chart, she is above the 10th percentile in weight, and close to the 50th in length. So, okay Billie. Take a deep breath, and RELAX...

Still, I must insert a small rant here... Feeding these kids is the bain of my existence. I hate it. It sucks. So there!

All in all, it was a great appointment. Everyone seemed to really listen to our concerns, and it was nice to have everyone on the same page. The team will meet together within the next week and will write up a report and a treatment plan for the next six months and send it to us. If you have a child with different/special/unique (whatever) needs, you know that coordination between specialists can be a real pain in the rear, so in many ways this approach was a breath of fresh air.

The most significant changes, or tweaks, to our current plan that came out of this appointment were:
1. Increase dosage of reflux meds from 15mg of Prevacid daily to 30mg.
2. Reinstate use of Periactin as appetite stimulant (we had some concerns that this med might be causing Eden's respiratory viruses to become worse, but this doctor doesn't feel this is the issue)
3. Think about private speech and feeding therapy with the therapist at this clinic.
4. Get hip x-rays to use as baseline. There is some concern about left hip socket and shorter length of right leg.

We are also going to look into hippotherapy (therapy on horses), swim classes, and Euro-Peds or Conductive Education this summer. The E-P or CE will depend on whether we can manage, without significant disruption to our overall happiness and emotional well-being, to fit it into our schedule. It is all a delicate balance.

In addition to our big appointment, we have a boatload of new equipment that I wanted to review here, and share my thoughts on.

First off we have the new Columbia High-Back Wrap Around Bath Seat with an abductor. At first I thought this seat wasn't going to work. We put the abductor in as far as it went, and tried it out, but Eden was still scooching her bum all the way forward and ending up with a very rounded back in the tub. As with most equipment, we made a few tweaks of our own including drilling another hole to move the abductor further in (thanks Papa!), and fastening the mesh seat bottom to the back of the chair so it wouldn't slide forward, and voila! Now it is working out fabulously.

We were extremely picky about the bath seat for several reasons. First, we didn't want it so huge and cumbersome that Holland couldn't take a bath at the same time. Second, it had to be all the way down in the water or Eden would be forever lurching out of it. She LOVES water, the more the better, and is not content unless fully submerged. Lastly, it could not be reclining in any way. A lot of the bath seats out there recline slightly, and while Eden could probably use the support, she WILL NOT lay back, and spends the entire time trying to sit up, which ends up as a total struggle. I was very sure that we would never find anything to work for her, and am pleasantly surprised with how well this seat is working out. It's a little tricky getting her bum clean, but we improvise and get the job done.

The Special Tomato Multi-Positional Seating System came in as well. The jury is still out on exactly how well this one is going to work out for us. For one, part of my semi-numb brain didn't process exactly what we were getting, and I half-thought that we were getting the Special Tomato Floor Sitter, which would replace the Tumbleforms Feeder Seat that we are currently using. At the same time, I KNEW that the chair we were getting was the one that had foot-plates and could double as a car seat, which the floor sitter does not.

On the pro side, Eden sits fabulously in this chair. It is very supportive and seems extremely comfortable for her. She likes sitting in it, and it works well as a seat for writing or coloring, doing projects, and eating snacks. It is soft, the desk has a grippy surface so things don't slide off easily, it is easily adjustable and will grow with her for a long time. On the downside, it is HUGE, takes up a lot of space and is HEAVY, so not very portable at all. We have the wheeled base, and the PT mentioned looking into the stroller option, but I think we might wait to see how useful it will turn out to be.

Another major development in our household...we've gotten ahold of a little Quickie manual wheelchair, and Eden can DO IT!!! Back story... On Monday at school we ran into a little boy with Spina Bifida using this tiny little manual wheelchair. He was awesome, could get himself in and out of the chair and was very proficient at getting around with it, even doing some cool tricks:) I had an AH HA moment as soon as I laid eyes on this little chair and HAD to try it. I asked the little boy if Eden could sit in his chair, and he was very happy to let her try it out. Eden sat in it beautifully and her little eyes lit up. We didn't try moving it that day, but I was sure she could do it, given how well she has been moving her Rifton Dynamic Stander lately. On the way out I mentioned it to the OT, who said she thought they might be able to get ahold of one for Eden to try.

On Wednesday I got a call that they had one, and on Thursday we got to try it out at PT. It was all so very exciting, because of course, little Eden knew just what to do when she got in it, and very happily started rolling herself down the hallway at school. She quickly learned to back up, turn both ways, and spin around, as well as go forward. We were all so excited and her speech teacher even got a little teary.

We brought the chair home yesterday, and she has already spent several hours in it. She LOVES it, asks for it, and wants to show it off. Possible down side...she won't go in her pony at all. "I don't want walker...I want WHEELCHAIR!" I'm hoping that the novelty will wear off and eventually she will use both equally well. I see this chair as a really functional way for her to move around in small areas, like home, school, other people's houses, and even at the store when Holland is walking for quick trips. The power chair will still be more functional in the long run with big trips, like to the Zoo or an amusement park or the mall. The power chair has the lift feature, which will be awesome in allowing her to lift up to sit at the table at, say, a restaurant. But the manual chair will be SO MUCH more easily transported for smaller trips. It also has a push bar to use if she is tired or can't keep up. Very handy. It still needs some tweaking (what doesn't?) to move the lateral pads in, and to keep her feet in place, but overall it is in excellent shape and fits her well.

I am super excited about the manual chair for purposes of building upper body strength (MAJOR bonus), and working with both hands bilaterally (good brain exercise). So whoo hoo for the possibilities!

If you made it this far, you must really love us, so please click here and go support Team Holland and Eden as we walk to help save babies! The walk is two weeks from tomorrow, and we still have a loooong way to go. If everyone reading would give just $5 we could surpass our goal in no time:) Please help us to be the #1 Family Team for the third year in a row!

Wednesday, April 09, 2008

Never the Same

My Daughters Are Fine, but I’ll Never Be the Same

This article was posted on the Preemie Blog Moms group, and I really found it relevant to the micropreemie experience. It made me cry. But then again, what doesn't?

And just in case it makes you cry too, here's a little something to lift your spirits...

Thursday, April 03, 2008

Good News All Around!

"We have reviewed a request to reconsider the decision not to authorize the above service. We are pleased to inform you that (medical insurance) has reversed the original decision not to authorize services."

In other words, we have approval for power wheels!!!!!!!!!!! Yippee!!!!!!!

I take back everything negative I said about them. Weelllll okay...maybe not everything:)

I also got a report in the mail today from Eden's speech and language evaluation, done 2 years post cochlear implant, at the center where she got her implant. The scores themselves are somewhat hard to swallow, especially since I am a school psychologist and standard scores are what I do. The thing is, ALL the tests are normed on kids with no hearing loss or physical limitations. I KNOW this logically, but still...she's significantly below average in terms of scores. On the very bright side, the report summarized the examiners impressions like this:

"Eden is successfully using her cochlear implant to develop spoken language. Her progress continues to be steady. The effects of cerebral palsy impact her breath support for speech; however, marked gains have been made in this area. Eden's performance is in keeping with what this center typically sees from a good cochlear implant user 24 months after activation when no disability is present."

Did you catch that? Her performance is TYPICAL for GOOD CI users 2-years post implant. I am so proud. Clearly, she is brilliant, and beautiful to boot.

Her sister isn't bad either!

Don't forget to support Team Holland and Eden!