Friday, September 28, 2007

Pay it Forward

Thank you all so much for the kind words and positive thoughts that you sent our way during Holland's recent illness. We survived, and in the grand scheme of things, three nights in the hospital with a cold is obviously small potatoes. However, it certainly helps us to know that so many of you out there care about our family, and kept us in your thoughts and prayers.

While I was whining about three sleepless nights, my blog-friend Korinna has been going through a lot more. Will you all please visit her blog and send some of those prayers and positive vibes in her direction? I know she, and her little Lena, could really use it.

Packing Up

We're being discharged this morning!

Thursday, September 27, 2007


Sleeping for an hour and a oxygen...satting 93.

Hopefully we'll be "sweeping" in our own beds by tomorrow night.

Sweet dreams!

Warning: Crazy, Tired Mom Venting Ahead

Well, we officially survived night two. I HATE staying overnight at the hospital. I know that there are many, many amazing nurses out there in the world, and especially at this hospital. We love many of them, we really do. But must they specifically relegate the crappy nurses to the nighttime shift? Why? We all know how important it is to get a good night's sleep, so why must you interrupt the sleeping baby ALL NIGHT long? Repeatedly? Have a little bit of compassion. I know you are just trying to do your job, but WHY do we need to be interrupted every hour? Is it really vital that you know her blood pressure and temperature at 3am when she is sound asleep? Could you please try to coordinate so we don't have a nurse in at 12am, a tech in here at 1, and respiratory coming in at 2? And why can't you open the door quietly? Why do you insist on TALKING to her? When you try to comfort her and tell her "it's okay" you just upset her more. She doesn't believe you. In fact, she doesn't want to hear your voice at all! If anyone should say anything, it must be her mom. You're going to wake her up and I just spent TWO hours getting her to fall asleep!!! Turn down the damn lights in the hallway so we aren't blinded every time you open the door. And shut off that stupid alarm that keeps going off RIGHT OUTSIDE our door. In Holland's words..."Makin Me Cwazy!"

Thanks for listening. I feel so much better now. Just needed to get that off my chest!

We'll definitely be here again tonight. I refuse to make any predictions about tomorrow. Holland's words again..."Can I go home now?" "Can I sweep in my bed?"

Wednesday, September 26, 2007

Guess Where We Are?

It sure isn't the Hilton!

All is well, now that I finally got her to go to sleep. Poor thing. She has the hardest time falling asleep in the hospital. She kept saying "I'm not sweepy." "Can I home home now?" "Can I sit in the chair with you Mama?" "Can I play a game." Over and over until she was utterly exhausted, then it just became, "mom, mommy, mama, mommy, mom," until she FINALLY gave in and fell asleep.

It's just the usual. Started as a simple cold, and progressed throughout the day, until she was needing treatments about every 2-3 hours, and I could tell she was having trouble breathing. Then we packed it up and headed to the doctor, who then sent us to the ER. She just has a hard time keeping her oxygen saturation up when she gets sick. She doesn't seem really bad to me, so let's all hope that this ends as quickly as it began. I just can't do a repeat of last time.

These are some of Holland's very first attempts at photography...

Monday, September 24, 2007

The Girls

Thursday, September 20, 2007

Little Miss Chatterbox

I meant to post this around Halloween, for Eden's two-year hearing age birthday, but I just can't wait. Her language is coming along SO well now! About a year ago, one of her therapists said we should start working toward get her talking on a computer because she would likely never talk in sentences. Now she has started SINGING! Seriously, she loves to sing and knows most of the words to many songs. She also listens very carefully to new songs, and picks up the words really quickly. I don't want to exaggerate, mostly she picks up the last word in each sentence, and sings that, but if you slow it down and give her a chance, she really does know more of the words than you'd think. She sang Happy Birthday to me on my bday and got almost all of the words by herself!

In this video, she is really focused on playing with two Elmos that she is holding, so she isn't paying the best attention to me. I wish I had a video of her watching the video. She thought it was so funny to watch herself, and was saying everything I was asking her to say in the video. Super cute!

I really am so proud of her. It is so amazing to me that she is profoundly deaf. Without her cochlear implant, she really cannot hear ANY speech. And now she says "I love you Mama." Amazing.

Monday, September 17, 2007

Always More Questions

We had an appointment last week with a new doctor who happens to be both a "developmental pediatrician" and a "pediatric physiatrist", at the Center for Exceptional Families. I was happy with the appointment, because I felt like this doctor was very thorough, thoughtful, and had a lot of good ideas. The appointment lasted THREE hours. That tells you a lot, because if you have any experience with doctors, you know that you usually get to see them for less than 20 minutes where you feel rushed and forget what you were there for in the first place!

I want to sum up what we talked about with the doctor, mostly for my own benefit because we covered so much that I feel kind of scattered and overwhelmed, and I need to sort out my thoughts.

I'll start with Holland, cause she is a little bit easier. Holland's diagnosis remains the same with regard to her CP. She has a mild left-sided hemiparesis, with overall hypotonia. She will continue to wear her Jumpstart orthotics to help with balance, and also to keep her feet straight and her ankles from rolling. In terms of therapy, she will continue with once a week outpatient PT, as well as 30 minutes each once a week of school-based PT and OT. The doctor recommended any additional therapy be recreational, such as dance, gymnastics, hippotherapy, or swimming.

This doctor also recommended looking into vision therapy for Holland to help with tracking, and eye coordination. The jury is out on whether VT actually works, and as with everything, there are varying opinions as to whether or not to do it depending on who you talk to. We have talked to people whose opinions we respect on both sides of the spectrum.

The doctor was concerned about both girls' BMI, as they are both obviously underweight (DUH!). She recommended Benecalorie to increase their calorie intake, and Benefiber to help Holland with, um, another of her issues. I have to look into where to get it, and I know many of you have used the Benecal so I would be happy to hear any tips you might have on where to get a good deal.

Eden was originally diagnosed with Spastic Diplegia CP in August 2005, when she was just a year old (8.5 months adjusted). At this recent visit, the doctor changed her official diagnosis to Quadriplegic CP with mixed tone. I guess I have mixed feelings on this. It definitely sounds worse, but she is still the same old Eden, so I suppose it makes little difference what we call it. The doctor said that most kids who are truly diplegic will walk, and have less involvement of the trunk than Eden. I pointed out that Eden does have good use of her hands, and I thought that the quad diagnosis meant that the hands would be more affected. She said that she feels Eden does have some mild spasticity in her hands, but I don't know about that. I think she has some issues using her hands because of the low trunk tone at her shoulders (makes it sometimes difficult to get her hands where she wants them), but if she is in a good supported position, she has great fine motor skills. But whatever. Eden definitely functions more like a quad than a di, but it is mostly due to the severe hypotonia in her trunk, so we'll go with it.

The good news was that she feels the spasticity in Eden's legs is very mild, and she is not a candidate for botox, casting, or surgical intervention at this time. She said that IF it weren't for the trunk issues, Eden would definitely walk (whatever that is worth). She recommended more intensive therapy for Eden's trunk, in combination with hippotherapy. She made two suggestions, one being EuroPeds, and the other Conductive Education. Both are pretty intense approaches to PT and OT, with many more hours put in than we are doing now. Right now Eden gets about 3 hours of PT/OT a week. With EuroPeds or CE, she would be doing 6-20 hours a week. So, I came home and started doing some research. As soon as I make up my mind to maybe give it a try, I talk to our PT who hasn't seen kids have good results with either approach. There would likely be a lot of crying involved, both on Eden's part, and my own, and in Eden's case a lot of breath-holding, turning blue, and passing out. Our PT said that most of the kids she know who have tried it end up hating PT, and giving even more of a fight than before. She also said that what little gains they do achieve are usually not maintained. She has seen more success with kids who are a bit older than Eden, and are able to understand the therapy process a bit better.

As with everything else, there is never a right answer. Is more always better? Are the time and money we spend going to pay off? Is our goal really to get Eden walking, or just to have a happy well-adjusted kid who knows we love her the way she is? There are always more questions than answers. I need a crystal ball.

In other Eden news, we got a prescription for Periactin (antihistamine that doubles as appetite stimulant)! I am looking forward to trying it. As an aside, Eden has been doing some fabulous eating lately. I think that the Prevacid may actually be doing something to help. But I still think the Periactin is worth a try. I know a couple of kiddos who have used it with good success. We tried in April to get a prescription from our regular pediatrician, but she, in cahoots with the allergist/immunologist, told us no. They said that it is contraindicated in kids with respiratory issues (asthma). I looked it up, and could not find this contraindication. I talked to the new doctor about it, and brought up what I had been told before, and she was surprised. She had never heard of this, and has used the medicine many times in the past with other kids with similar issues. She was comfortable to put both girls on it. I decided to try it with Eden first, since she has much less respiratory related issues, and is also the smaller of the two. If we have good luck, we may try Holland on it also.

The doctor wants us to complete a 3-day calorie count for both Holland and Eden. I thought I wanted to do this, until I started trying to do it. It is extremely difficult to quantify how much these kids eat. I tried measuring out their bowl of cereal for breakfast, then totally stressed out making sure that they ate every bite. It was horrible. I am not sure I want to know exactly how many calories that are eating. I really am doing the best I can. If I try the Benecal, and the Periactin, what more am I willing to do? They do eat, they like to eat, and they are growing, albeit very slowly. I don't want to mess with a good thing. We HAVE made progress. I wish one of these doctors would give us a little credit. Just a little acknowledgment for the extremely HARD WORK we have done to get them this far with eating. The blood, sweat, and tears that we have endured...well, maybe not blood, but definitely sweat and tears. Heck, they're on the chart for height. Doesn't that count for something???

Sorry, got off on a tangent. Back to the doctor appointment. We talked about Eden's swallowing issues. She does great most of the time, and can chew like a champ, but still chokes occasionally with thin liquid, like juice or water from a cup. We are finally going to take her in for a swallow study. Not sure what may come out of that except that they will say, yep, she chokes on thin liquids, maybe you should add thickener? But, it has been recommended more than once, and it's not so invasive, so we are going to do it and see what comes of it.

The doctor also wrote scripts for an adaptive toileting evaluation, and a motorized wheelchair eval. We recently applied for, and got, Children's Special Health Care, which is basically our state's Medicaid for children with qualifying disabilities. We pay a pretty affordable premium, and it will cover whatever equipment that Eden needs that our regular health insurance won't. We plan to take full advantage of it, and order all of the equipment that Eden needs this year. I am excited but also a bit worried about the whole power chair thing. I absolutely KNOW Eden will love it, and will learn to use it within the first two minutes. However, as with her pony walker, I am afraid that once she has it, she won't want to do anything else! My plan is that she will use it outside of the home, like at the mall, and the grocery store, and out to dinner, but not so much in the house.

Once we get the chair, we will need a way to transport it. John's car lease ends in 5 months, so I guess we will have to get a van and CSHCS will help us pay to have it adapted for a wheelchair. I can't believe I actually have to buy a minivan. It's not cool to laugh at me. I'm only doing it because I have to!

He can run the pants off a kangaroo!

There's a song that The Wiggles perform that I love, and sing regularly to my girls. The song is called Old Man Emu, and the message is simple and profound. We all have our strengths and we all have our weaknesses. There is something awesome and unique about everyone, and it is important to recognize and appreciate differences.

My favorite part goes like this...

"Well there is a moral to this ditty
Thrush can sing but he ain't pretty
Duck can swim, but he can't sing, nor can the eagle on the wing
Emu can't fly, but I'm telling you, he can run the pants off a kangaroo."

Watching this video clip reminds me of that song.

I am working on a big post about our appointment, and should have it up before I go to bed, but I hope you will enjoy this in the meantime:)

Wednesday, September 12, 2007

For Now

We had a big appointment today with a new doctor, and I have so much to tell you...when I get a minute. For now, I'll leave you with some new photos of my lovely girlies.

Wednesday, September 05, 2007

No Right Answer

I was going to call this post "To Pull-Up or Not to Pull-Up" but I guess the answer to that question is really out of my hands. Holland told me this morning "I don't like Dora training pants, I like my diaper."

I am not going to force the issue because, well, I don't feel like it. I'm clearly not really keen on the whole potty training thing anyway. I really want it to be easy with as little power struggle as possible. I'm waiting for her to potty train ME.

That said, I promise not to say "just go in your diaper" ever again!

The dynamic is getting a little tricky already, in terms of training Holland before Eden. I really think it would be easiest if I could get Holland trained, then start working more with Eden, but I'm not sure if Eden will have it. She has been crying and saying "my turn" when Holly is using the potty.

But golly. How is this possible? Eden is going to be tricky, just because she can't sit on the potty by herself. But how can I take off two diapers, hold Eden on the potty, help Holland, wipe two butts, wash two pairs of hands, all by myself at the same time??? And what if we're out in public??? Gah. I don't like Dora training pants. I like diapers.

Saturday, September 01, 2007

For the Record

Poo poo in the potty, poo poo in the potty, poo poo in the potty...

She asked to use the potty three times today. The first time, we got nothing. The second time she peed, and the last time she POOPED!!!

Yay Holland!

I just can't imagine her potty trained. It's weird. Makes her seem so...grown.