Hospital Life

Here we are again. Mieko has been hospitalized at St. Paul Children's for more than a week. She has RSV, respiratory syncytial virus. This is the second year in a row and this time it's a very severe case. The docs are somewhat stumped since she gets injections of synagis. This isn't a vaccine, but it's supposed to keep you from being as severely effected. Last year Mieko had a much milder case and did not end up in the PICU. She's been on a ventilator for more than 10 days and has at least a couple more days to go. Luckily, she's on the mend and we're very comfortable with the care she's getting. Unfortunately, we've been through this before. Mieko's not always in the PICU, but she's usually in the hospital at least a couple of times each winter. We have a routine down.

Here's what I usually do when our world revolves around the hospital.

What we bring:
-list of medications incl. doses and times given
-feeding schedule incl. amounts and times
- extra clothes, toiletries
- cell phone chargers
- notebook
- small stuffed animals
- distractions--- for me it's knitting, for my hubby it's a palm pilot with electronic games, books, magazines, etc.
- photo or photo albums

I carry the med and feeding sheets with me all the time. It's really helpful, especially when you're sleep deprived and can't remember or don't feel like reciting all of those meds. While you're in the hospital it's also a good idea to check your child's medication list (MAR), so you can make sure everything's been transcribed correctly. If you want a med given at a certain time, let them know. Now, the stuffed animals may seem trivial, but not only do they bring comfort and familiarity, the nurses like to use them as little pillows to help prop things up in bed. Lastly, I like to put a smiling photo of Mieko on her bed so that the docs, nurses, and therapists can see what she's like when well. It gives us all a goal and I think everyone feels more connected to her. This time, I also brought a photo album showing her many activities. I think people really get a sense of her and that Trisomy 18 isn't the same for every kid.

Once you're admitted... most of your contact will be with your assigned nurse. The shifts can change every 8 hours, sometimes less and sometimes more. A resident will be assigned to your case. This doctor will check on your child daily and communicate with their supervising doc. Since these residents are continually rotating, you will probably never see the same one on subsequent visits. In my experience, they're very eager to please and communicate with parents. The St. Paul Clinic docs and specialists also round (check on the kids) if needed.
In the PICU, there are daily teaching rounds with the residents. The parents are always welcome in these discussions, but they might not go out of their way to invite you.

A few things to remember... dont' hesitate to speak up! If you don't understand something or don't like the way something's being done, let them know. If you don't feel comfortable talking with them directly, there is a family liaison representative at Children's. They work as an ombudsman as well if you have a complaint. Also, give yourself a chance to both rest and exercise. The hospital is a tiring place. A break to get outside or just walk around for a while can make a big difference. Even though we wish we didn't need this routine, it's nice to know so many familiar faces at Children's. We know she's in good hands . We feel like we know just about everyone. We hope the rest of this year, they'll see more of the healthy Mieko than the one lying in the hospital bed right now.

Toys for Everyone

Ahh yes, it's toy time. Finding just the right thing for any child can be tough, but for special needs kiddos it can be a big challenge. What do you do when you child can't tell you want they want? It's a guessing game. It's also tough when many of the toys out there aren't made for children with developmental and physical disabilities. My trusty online friends have given me wonderful ideas.

There are these options to check out online:

Beyond Play specializes in early intervention
http://beyondplay.com/


Toys R Us has a catalog for "differently" abled children:

http://toysrus.richfx.com/catalog_toysrus/diffabled_06_t/diffabled_06_t.html

Exceptional Parent Magazine makes their recommendations:


http://www.eparent.com/toys/2006_toys.html


The first two options will show many toys used by all kids, but organized by skill such as "cause and effect" and "fine motor". They're helpful tools and I'm glad these companies are trying to include our kids.

But, I've learned you don't necessarily need to buy a special toy, you can adapt your own. Now, I'm not a handy person and I'm not really comfortable with tools, but I learned it's not that hard. Once again, St. Paul schools taught me something really valuable. Rondo Early Childhood Special Ed held a great seminar on adapting toys.


The "wizard" of adaptation ( occuaptional therapist) and a volunteer assistant showed us step-by-step how to turn make any electronic toy work with a switch plate. We learned how to solder wires together to add a plug-in adaptor. The switchplate then plugs in and can activate the toy. It's really quite simple and inexpensive



All you need is a soldering iron, speaker wire, and plugs you can buy at Radio Shack. By the end of the evening, we had adapted talking and moving puppies and cookie monsters and radio controlled cars. It was such a treat and very empowering. We even got to take home the toys and the soldering irons. The switchplates are pricey to buy but the school had several to loan us. They're also available at http://albenetinc.com


For kids who don't have some of the fine motor skills to work conventional toys, this is a great option. It's not just little toys, check out this adapted Thomas the Train.


With this kind of expert help, even us parents are discovering we can accomplish new things. Thanks!

'Tis the season we dread

I'm talkin' viral season. Yes, it's finally freezing here in Minnesota and that means everyone is staying inside and passing along every variety of virus. I think one of the scariest places for me this time of year is the elevator....any elevator with a sneezing, wheezing, hacking person within close range of my medically fragile kid.

When Mieko is well, it's so easy to forget she is extremely vulnerable this time of year. But, we had a reality check once again last Friday. A little fussiness and sneezing turned into a full-blown respiratory crisis. She had her first hospital stay for the season. The good news: it was a very brief stay at Children's St. Paul, we caught it early. The bad news: it's only the beginning.

So what's a special needs parent to do? How do you keep your child protected but still have a quality of life? Mieko had her flu shot and she gets monthly injections of synagis (to prevent RSV). The docs tell us we should limit her contact with large groups of people from November through March. That's a heck of a long time to stay home. We try to do our best with handwashing and making sure sick folks don't come over. But what else? Some trisomy parents I know use different nutritional supplements to help boost immunity. Mieko is compeltely tube fed with pediasure with fiber. We give her some V8 juice daily for some natural vitamins, but I haven't figured out what else may actually make a difference.

We still go out, especially if its a family gathering. I would love to keep going with the play groups, the baby ballroom dancing classes, pool therapy, sign language classes, parties, and play dates. All things that enrich our lives. But are they worth a hospitalization? We try to balance and so far this season, we've been pretty active and the illnesses have not been too bad. But, how far do you push it? Any thoughts? What works for your family?

Home is Where the Resources Are...

It's a constant topic of conversation in our home... where should we live next? We have many stairs in our condo and carrying 23 pound Mieko with her back brace on is getting more and more difficult. Plus, there's not much room for her to get around in her walker. Every year there are lists of Top 10 cities for families, singles, retirees , etc. I often wonder aboaut the best place to raise a special needs child? Where are the best doctors? hospitals? special education programs? support resources? Safe neighborhoods and decent schools are great, but there's a lot more to consider for some of us.

I've become very attached to St. Paul. There's great comfort knowing St. Paul Children's Hospital and Gillette Specialty Care are just a few minutes away. There's also the Univerisity of Minnesota in Minneapolis and the Mayo Clinic in Rochester, if we need a second opinion.

I'm very impressed with the special education services in St. Paul schools and Mieko's not even old enough to go to pre-school. She's been getting special ed services at our home since she was about 6 months old. The teachers, therapists, and social workers are dedicated and compassionate. Most of the staff I've encountered at the Rondo Early Childhood Special Ed program have been with the district for years and have a great depth of knowledge.

There is very little the school hasn't been able to provide for us. They have a vast lending library of toys and equipment. Mieko's walker, gait trainer, chairs, benches, bath seat and much more all came from the school. If it's not the right size, there's a wonderful Occupational Therapist who adapts it for us. There are also play groups and support groups for the parents. We really couldn't ask for more, except maybe more money in the budget to expand these programs. Even though my hubby would love to move to the burbs (he works out there), I think we'll be staying put. Financial resources are another big consideration, but I'll leave that for another day.

I realize just how good it is when I meet other families who aren't so fortunate. We recently met a mom with a T18 baby from Nebraska. They live 3 hours from ANY hospital. One hospital agreed to take their son as a patient, only if the parents agreed to sign a Do Not Resuscitate Order. The family discovered this was illegal. Their son is now getting the care he needs at Children's Hospital in Minneapolis. But it took reaching out to some other T18 families through the Support Organization for Trisomy (SOFT) to help make it happen. Just another example of why we need each other.

So, how do you think your area rates for special needs kids? Wouldn't it be great if someone actually did this kind of nationwide research and made it easily accessible?

Thanksgiving

I thought there is no better time to start this blog than Thanksgiving. This is now Mieko's third Thanksgiving. I remember getting the Trisomy 18 diagnosis at about the 21st week of pregnancy, just before Halloween. Every holiday, birthday, family gathering, all I could think about was whether she would ever experience what we all take for granted. She has surprised us all. It's hard to think of anyone being a long-term survivor at just two and a half. But in the trisomy world, Mieko is unique. Everyday she impresses us with her perseverence and spirit.

But we're all human. We get weighed down with the phone calls, e-mails, appointments, work, meetings. All those things that seem so urgent. During the holidays, we may slow down for a few hours and enjoy our time together. This Thanksgiving, I'm going to remember all of the families who don't have time. Their time with their children has passed. Every special day is marked with an ache for the one who's not there. It is a parent's worst fear and one that hangs over my head.

People sometimes tell me they're inspired by Mieko and all she's accomplished. I'm inspired by those families who've lost their children and still press on. Like authors Amy Kuebelbeck and Deborah Davis. They are currrently compiling the stories of families and how they made the most of time on earth with their children. It's called Gift of Time (see link below). Just seeing that they can go on and teach others, gives me hope. Thanks.