Monkey Goes Scary

Every Halloween, my Monkey Boy is afraid of people in masks. He hates masks, he especially hates faces painted with fake blood. Yet all of a sudden this year he wanted to be "scary"! So here he is, in all his gauzy ghoulish glory. :)

Who could resist??

Seriously, who could NOT want to smooch this face??

Getting ready for Halloween

I like to make Peanut's Halloween costume around her wheelchair. I used to buy her a costume, but once she's in her chair and all buckled in, you could hardly see it. So last year I decided to make her costume - a bubble bath. This year, I went for cute overload. She is a kissing booth!

Evaluations, Reality, Hopes, and Tears

I asked the school district to re-assess my Peanut, even though it had only been 2 years. They are required to formally re-asses the student every 3 years, but I thought that she had come so far in 2 years that she should be tested sooner.

I wish I hadn't. :(

Two years ago, on her third birthday, my Peanut tested severely developmentally delayed and was finally labeled with the horrid "Mental Retardation". She was tested in every field and area, and overall her developmental age was 6-9 months.

Two years later, on her fifth birthday, she averages 8-12 months. In my mind, she is doing SO amazing right now! She is more active, aware, alert, and mobile than ever. I guess though that what seems like huuuuuuge steps to me and our family and everyone who knows her ... really are not that big of a deal.

I know that in the scheme of things it's what WE see that matters. It's how happy and functional she is, not how she scores on paper. It's sad that the school sees her as so low, when in my eyes she is as high as the heavens.

I don't know if I'm even making sense in this post. I hate evaluations.

Happy Birthday Princess Peanut!

Five years ago today our lives were blessed with the most amazing, interesting, awesome being ever. We are SO lucky to be her family!

WE LOVE YOU!!!

HAPPY BIRTHDAY SWEET GIRL!!

Feeding Is a Nightmare

My Peanut has been fed through her g-tube since she was 10 months old. Prior to that she drank from bottles, but not well. She never took more than 10 ounces a day. Yes, a DAY. And what she did take was in half ounce increments, and it would take 45 minutes to get that much in her. She had low muscle tone in her mouth, and would dribble all over. It was not fun. Then at 10 months she got parainfluenza, ended up on an ng-tube, waiting to recover so she could have a fundoplication and g-tube placement. She was tiny, about 12 pounds. She got her g-tube when she was over the parainfluenza, and she has never eaten by mouth again.

She *CAN* eat by mouth. She can open her lips, she can chew, and she swallows normally. But she will not do it. She is so orally aversive that we are considered feeding therapy drop-outs. She simply can not be fed by mouth. Reflux is a HORRID thing!

Due to her metabolic disorder, she cannot go more than 3-4 hours without fluids. During the morning and day time she gets Pedialyte every 3 hours. Then she is hooked up to her feeding pump (Zevex Infinity for those in the know) from 3:30pm-7:00am. It is such an inconvenience. The reason she is hooked up for SO long is that she has never tolerated more than 50 cc's an hour. That is sloooooow for pump feeding. To give you an idea of how much it is, 60 cc's is 2 ounces. She tolerates less than 2 ounces an hour, by a slow drip. When she wakes up in the morning, she always chokes and gags and retches until she throws up. Then she always throws up her morning Pedialyte.

The GI had this thought that perhaps it was the Beneprotein that was making her throw up. He said that many patients don't tolerate it. My Peanut has always been a retchy girl, but this is worse than ever before. Her formula is a mixture of Neocate Infant, Beneprotein, and Polycose. So we are doing a trial right now. We are ONLY giving her Neocate Infant. She stopped throwing up! We tried it for 5 days, with NO throwing up. She still retches and gags, but no actual vomit. So I added back in the Beneprotein to see what would happen .. and the next morning, she threw up. I took it back out, no more vomit.

AH HA! An answer perhaps! Even better, is that on just Neocate Infant I have been able to get her feedings up to 65 cc's an hour so far. For every cc that I can increase her, it lowers the time she has to be hooked up. It is much easier in the afternoon when she's awake to NOT have her connected.

So that's where we are. I don't think she can stay on just Neocate Infant forever, because we have to lower the volume of formula per water due to her metabolic disorder. She is not getting the full fat of the formula, so we need to add in supplements. I am waiting to hear from the metabolic dietician to see what to do next. In the meantime, we haven't had puke in almost two weeks!!

Finances and Special Needs

It is NOT cheap to raise a special needs child. Yes, we get free health insurance for her. Yes, her therapies are free. That doesn't mean that everything else is. Even though we get IHSS for her, it is not enough. Driving back and forth to appointments, therapies, meetings ... the simple fact that I can not get a job. Not that I would want to work and put my children in daycare, but we are so close to "not making it" financially that I have to consider it. It's not possible for me to hold a job due to Peanut, but life isn't listening to that.

We need to get her a new bed. This one - http://www.efurnitureshowroom.com/emily-trundle-day-bed/prod_2998.html?gdftrk=gdfV2405_a_7c480_a_7c1516_a_7c2998 - is PERFECT! I found a cheaper one near us, but the arms of the bed slope downwards and she could climb over them when she's on her knees. This one linked above, THANK YOU TAMARA, would be I*D*E*A*L for my Peanut. (For those of you that really KNOW me and my Peanut, you know why this bed is even MORE perfect! Please don't comment with personal information however)

So now what? What good does that do me? I have a mattress already. I have room in her bedroom. But I don't have that kind of money.

What I do have is an eBay store, that is trying to stay afloat. What I need is a miracle.

It is sad to me that as parents we are not only dealing with the physical and mental and emotional side of dealing with a gorgeous but disabled child, but also drowning financially. :(

Sleep Safe Bed

I am in the midst of trying to figure out what to do for Peanut's sleep environment. She is in a crib still, but she'll be 5 next week .. and it's starting to not be such a great thing anymore. She turns around too much in her sleep and gets her legs stuck out the bars. Then she wakes up screaming because she can't figure out how to free herself. I tried a bumper guard thing, but then the railing doesn't go up and down so how do you change diapers or cath in the crib? Also she got her legs even more tangled in the bumper guard than in the bars themselves.

She can't go in a normal bed, she has no safety reflexes. She'd fall right out. And the bed rails that they make for kids aren't big enough. She would roll the the end of them and fall out. She likes to get up on her knees and kneel (tall kneel, for those who know LOL). She would topple right over the bed rail.

So I thought about my blog-friend Tamara, and her daughter Abby. She is in a gorgeous daybed that is turned around to face the wall, in a sense making a giant crib. But how do you change diapers? I assume I would then need a changing table in the room, but Peanut is too long for those. Her room is fairly small also. And as I priced day beds that would work (meaning, solid wood backs and not slats or bars) .. they are expensive.

So I am looking at SleepSafe Beds. I want a Sleep Safe HiLo for Peanut. Has ANYONE ever gotten one of these approved by their insurance? They offer letters on their website for you to modify to your child, to help get it approved. These beds are AWESOME, and would be perfect!! I am going to start working on it now, but I was looking for some encouragement from anyone that has actually gotten one before.

So let's hear it. How does your special needs child sleep? Is it working for you??