Wednesday, December 31, 2008

Happy New Year's & Anniversary To Us!

Today is New Year's Eve, and it is also our 10th anniversary! It is hard to believe that we have been married for TEN years. It's also hard to believe that it hasn't been longer. :)
When we got married, we wanted two children. We wanted them two years apart. We assumed we would have healthy, "normal" children. How little we knew!

We didn't know how amazing it could be to watch your five year take her first steps in a gait trainer. We didn't know the heart swelling emotions of watching your 8 year old snuggle with your five year old on the couch and watch Doodlebops "Even though they are for babies, because she loves them".

There are so many things that have happened in ten years. Two children, both with medical issues soon after birth. Almost losing Peanut many times. Surgery after surgey, tube feeding, catheterizing, and on and on and on.

The experiences are priceless. The smiles are priceless.
Happy New Year's to you all, and Happy Anniversary to us!!

Friday, December 26, 2008

Sometimes I think it just isn't fair!

I know life isn't fair. And I know how lucky and truly blessed I am to be Peanut's mom. And quite honestly, I am normally totally okay with who she is and how she is. She's awesome, really!

But some days I just think how unfair life can be. She was born at 36 weeks, with no known trauma. She was the product of a non-smoking, non-druggie mom. I did everything right, and everything seemed fine.

It's obviously not, and no one can tell me why. She doesn't really have cerebral palsy, but the doctors have given up and called it that in order to give it a name. No one can tell me "what she has". We know she has a metabolic disorder and microcephaly and encephalopathy. That doesn't explain what happened however. It is so frustrating!

A good friend of mine came over today with her kids. She has a 2.5 year old who was a micro-preemie. She was born at 24 weeks and weighed 1lb 9oz. She was tiny and not expected to survive. She is blind and delayed, and has cerebral palsy. She is tube-fed, but started eating a month or so ago. She now takes yogurt and baby food by mouth. She also started walking this week. This is AWESOME and AMAZING, and I am so proud of her.

At the same time, I am so insanely sad. My peanut is 5 years old, not 2.5. She is nowhere near walking by herself. She cannot stand up on her own, much less take unassisted steps.

I am so sad tonite. I just want to grab my Peanut and snuggle under the covers and cry my eyes out. And I know that tomorrow all will be fine, and she will smile at me and life will be okay. It just breaks my heart to see the things she is not doing sometimes.

How can a baby born with so many obstacles overcome them, and my Peanut with no obvious obstacles can't climb over them? It's simply not fair.

(Sorry for the ranting and pouting and crying. I promise I'll be back to normal next post!)

Thursday, December 25, 2008

Merry Christmas!!


This is the first year we've made sugar cookies that came out this good. It was a BLAST! :) I am in the midst of cleaning up wrapping paper and boxes, but I wanted to take a minute to come with everyone a Merry Christmas and Happy Hannukah! Our kids are lucky in that we celebrate both (mixed marriage). We did Christmas this morning, and are halfway through Hannukah.

I will surely update soon on our lovely Christmas, but I hope you are all having a blessed day!!

Tuesday, December 23, 2008

Shouldn't we get a break at some point?

It's two days before Christmas, as though I don't have enough stress already!! The company that delivers Peanuts GI supplies (feeding pump bags, formulas, syringes, etc) went out of business. Our account got transferred to Walgreens Option One HomeCare. They suck. Pure and simple.

First off, they are about 90 miles from here. They refuse to just UPS something overnight, they insist on courriers. They always manage to arrive at 9pm, when Peanut is always asleep, just in time to ring the doorbell and make the dogs go crazy.

I was supposed to get a delivery last week, but I forgot about it. It didn't show up, and I forgot to call and check on it. So when I opened the last bag for Peanut's feeding pump on Sunday, I said "Oh sh*t" and freaked. I called first thing Monday morning (yesterday) to Walgreens. I said that I was OUT of supplies, and needed them ASAP. They assured me that they would deliver them last night, so I wouldn't have a lapse. I did not trust them, so thankfully I washed out that nights feed bag to reuse last night.

This morning I realized that they didn't come last night. I called first thing this morning, and was told "It was raining wasn't it? That delayed the delivery until today". Uhm, no, it wasn't raining .... and I wasn't aware that special needs kids don't NEED supplies in the rain.

She promised the supplies would be here today. So the guy drives up at 7:30 this evening, and my husband goes out to sign for the stuff. Brings it in and I see that it's Neocate Junior, not Neocate Infant. It will make Peanut puke non-stop. I run out to the driveway and catch the guy as he's leaving. Explain the mistake to him. He says "Oh, well how old is she? She's not an infant is she?". Because he is obviously a medical doctor. Or a pharmacist. I don't know, but certainly not just a stupid delivery guy.

I quickly assured him that this formula would mess with her fragile metabolic disorder and send her to the ER in less than 48 hours. He said "Damn. Well, you'll have to call the office in the morning and have them send the right stuff". Thanks for the tip.

I am such a sarcastic bitch sometimes. I told him that I was sure I would be seeing him tomorrow because I have only one can of formula left, so I would be out by Christmas Day. I'm sure he'd rather deliver it on Christmas Eve than Christmas Day? I told him I'd let his boss decide.

LOL Poor kid. I'm sure HE didn't pack the stuff up and decide what formula to grab. But seriously, do I need anymore stress???

Monday, December 22, 2008

She's out of surgery.

Baby Jocelyn just got out of a three hour heart repair surgery. I am weepy with emotion as I imagine the doctors working on a precious four pound baby's heart. They are such incredible people.

Please keep praying as Baby Jocelyn heals and starts growing!

Friday, December 19, 2008

Please Pray

My son's third grade teacher had her baby this morning at 37 weeks. Baby Jocelyn wasn't growing well, she is only 4lbs 10.5oz. She has a heart defect that they are working on figuring out.

PLEASE pray that it's something simple, or at least fixable!!!

Thursday, December 18, 2008

Amazing Changes

Sometimes my Peanut seems to get stuck in a rut developmentally. This is so discouraging. It makes me want to drop out of therapy, stop going to all those damned appointments, and give up. It makes me want to just love her the way she is and be happy with where we are.

Then we have times like the current. She is doing SO good right now. She is getting better and better at walking in the reverse walker at therapy. They think that within another 2 months or so she'll be good enough to start the process of getting her one that is hers! That is amazing to me. I never ever thought she'd walk like that. The gait trainer I knew she could do, and she is AWESOME in it. But a reverse walker seemed so hard. She is getting it!!

Sensory-wise she is making some great advances as well. She is touching things with very little resistance, and sometimes reaching out and touching them herself! She has always been the most sensory defensive little peanut. Now when her teacher puts sensory things on the table in the classroom, she reaches right out and touches them. she still does not ever actually pick them up, but she touches them!! That is huge for her. :)

Another area of growth is feeding, although it doesn't seem like it. She can totally chew and swallow if you force food into her mouth. The problem has always been that if she doesn't chew the food, she would gag on it and choke until she threw up. She has finally learned how to spit it out! So although she's not actually EATING anything more than before, she has developed a new oral skill. It's a great step!

My peanut doesn't talk, except to say Mom. She does however make sounds, however not very many. The last few weeks though she is non-stop babbling! She squeels and it is so danged cute. I went to her class for a holiday party today, and everyone there is so in love with her! She was "talking" up a storm, and they were just enamored.

Everyone falls in love with this amazing being. I am SO blessed to be her Mom!!

Monday, December 15, 2008

Mommys don't get sick days!

I am sick. Sick, sick, sick! I am sneezing and snuffling and coughing and just plain SICK! Somehow though, life manages to go on. No one jumps in and offers to let me sleep all day, while they do the dishes or cook or do laundry. Mommys have to keep going.

Please pray that my Peanut doesn't get any worse. She has a stuffy nose, and she's sneezing a lot. If she starts retching with feeds, we're in the ER for IV's. Unfortunately with her metabolic disorder, she can't go without food/hydration for more than three hours. So a normal icky cold always lands us in the ER.

Can you imagine? They wouldn't know which of us to treat first! Please pray this doesn't happen.

Thursday, December 4, 2008

December is already here?!?!

I can't believe how busy we have been lately! Between therapy and appointments and PTO stuff at school, I am exhausted. I can't wait for Winter Break! :)

We think we have come to a happy solution in regards to Peanut's formula issues. The soy protein we tried was a flop. She spent the nights screaming, retching and throwing up. No fun! I finally found a protein that is soy AND dairy free, at Mother's Market,. It's brown rice protein powder. The only problem is that it doesn't dissolve into her formula, so it won't run through the feeding pump.

She gets a bolus of pedialyte at 7am, 10am, and 1pm. I now add half the daily protein powder to the morning and afternoon boluses. If I shake it up good and pour it right in, it goes through the g-tube. It just doesn't like the feeding pump! So she is getting her protein again, but with no retching or screaming fits. YAY!

I am still waiting for the metabolic and GI dieticians to come up with a blenderized diet option for us. They are still trying to figure it out. It's going to be hard, given that Peanut doesn't tolerate soy or dairy. Also, her metabolic disorder requires her diet to be low low low in fat, and high in protein. I guess it's a bit tricky to figure out what exactly we could blenderize for her, in place of formula.

For now I'm just glad we're not screaming all night, every night. She still wakes up at least once a night, and usually twice. But she goes back to sleep after a little snuggle and her Wiggles DVD on. :)

We have Winter Festival at Monkey's school tomorrow night. I was on the committee for this, so I am anxious for it go well. It's going to be a long and late night though, so good thing we have a nurse for Peanut! The school is right across the street from our house, so she can walk home with Peanut when she's done.

I better get going, I have a million things to do still for Winter Festival. It's almost 10pm and I am exhausted already!

Monday, November 24, 2008

The pictures & video you have been waiting for!

This is my amazing Peanut! The one that had an 18 minute cardiac arrest once upon a time. The one that we were told "If she survives, it will be in a vegetative state". The one that has time and time again proved them WRONG! :)
She is in no way proficient at this new walker. She has collapsed completely a time or two, because there is no seat or straps. She has to stand up and support her weight her with hands/arms all on her own. And she DOES it!!
God is good. :)

Wednesday, November 19, 2008

An awesome site for kids with hearing aids

This is just a quick post, I saw this in Parents magazine and wanted to make sure other people saw it! Luckily my Peanut has no hearing problems so we don't need these, but how COOL are they!

It's been a while since I updated ...

Things here have just been plain busy! The fires in Southern California have been really close to us, so the air quality here has been horrid. It smells bad, and it makes your chest hurt to be out in it too long. So we are spending a lot of time indoors and bored.

My peanut is doing well overall! Tomorrow we are adding a new (soy) protein powder to her feeds, to see how she tolerates it. I am crossing my fingers and hoping for no reaction! She is truly doing the best she has with her feeds right now, not that "the best" is very good. LOL But she's sleeping a bit better at night, and while she is retching and choking and gagging, she's not throwing up. Please pray that adding the protein powder doesn't upset the boat!

In some big news, my Peanut is doing amazing in physical therapy! We are putting her in a reverse walker that has arm prompts and handles. She needs you to stay RIGHT by her, because she will just collapse when she's tired of standing. But when we stand there and blow bubbles and sing and dance and act truly goofy, she stands! And even better, yesterday she took steps ON HER OWN in it! Now those who know my Peanut know this is HUGE. She walks in a gait trainer, but that doesn't need her standing on her own. A reverse walker is a major improvement! It means she is standing, supporting herself with her arms/hands, and WALKING! This is awesome. She is nowhere near consistant or good at it, but she is trying so hard. My goal is for her to be walking in this, by herself and safely, within a year. How amazing would that be?? :) I took some video yesterday, so hopefully tomorrow I'll have time to unload my camera and post it.

In some not so great Peanut news, I have to call her teacher in the morning and raise a bit of hell. Yesterday when I got her off the bus after school, her diaper was so wet that it went through to her shorts. It isn't that big of a deal if it happens once, especially considering that her bus ride is almost an hour due to all the other drop-offs along the way. But then TODAY she came home, leaked through to her pants again! Two days in a row? Obviously they are not checking her diaper right before she leaves school. I wrote a note in her communication book for the teacher, but I am really pissed. She gets diaper rashes SO quickly! And to be blunt, NO ONE wants to sit in peed clothes! She can't tell you she's wet - you need to check her. She deserves that. I know the teacher will be apologetic and do her best to stop it from happening again, but it made me sad that it happened twice in a row. It's hard to send off these precious Peanuts to school, without us. But we trust that they take good care of them while we're not around!

My Monkey is doing awesome. He's so far ahead in school, that he is getting bored. His teacher is great though and continues to challenge him and give him extra work to do when he's done. It makes my heart happy to hear how much the other kids like him. He loves nothing more than to finish his work up, and then sit next to another student and help them with theirs. He's such a good soul! :)

Well, that's about it for now. Thanksgiving is coming up, and we are getting a menu and plans ready. It'll be a big, fun, yummy day!

I hope that you are all doing well in BlogLand!

Monday, November 10, 2008

Feeding update

It's been over a month since we've tried easing Peanut's GI problems by changing around her formula mixture. Because of her metabolic disorder, she has to be on a low-fat, high-protein diet. It's hard to make when she doesn't take anything by mouth, everything through the tube has to be measured exactly right.

We stopped her BeneProtein, and her Polycose, leaving her on just Neocate Infant. She was better GI-wise than she had been in ages! She started sleeping so much better through the night, and although she was still retching and gagging, she wasn't actually vomitting. The dietician had me slowly add the Polycose back in, because she needs those calories. She did fine for two weeks, still no vomitting and still sleeping better.

Then the dietician asked me to add back in the Beneprotein, so we could be SURE it was that. It is a whey protein, which is a dairy product. We added it for two nights to her mixture, and we had two hellish nights. She was up screaming and writhing around in her crib. She was retching and gagging and ... throwing up. So I stopped the Beneprotein last night.

At least we KNOW what the problem causer is now! The dietician is now trying to find a protein supplement that is dairy free.

I had this thought this weekend, that perhaps I should research blended diets. Wouldn't it make more sense to get a recipe that would include all the calories, fats, proteins, vitamins, etc .. .that Peanut needs? Then I could blend it up real good and put it through her feeding pump that way.

I am a bit scared to ask the dietician about it, afraid to sound like a wackjob. LOL I think I will ask her when she calls me back. The worst she could say is "No, I don't recommend it".

Do any of you use a blended diet for your tube-fed kids, instead of formula??

Tuesday, November 4, 2008

Apparently God was listening ...

We have been desperate to make ends meet financially lately. It's pathetic, really. We had to stop taking Peanut to her horseback therapy. She needs a bed, but we couldn't afford one. I have huge medical bills from my surgeries this summer, which are being sent to collections. We were going to have a very frugal and simple Christmas this year.

I screamed at my husband, I cried in the shower. I literally sunk to my knees and prayed. I don't pray. I am not a very religious person at all. I do however believe in prayer and miracles, but I cannot remember the last time I really truly prayed.

I simply prayed for peace in our house. We just need to be "okay", so that my husband and I could stop arguing and everything could be happy again.

Then I got a call from Peanut's school. They just had their huge annual gala. I bought ONE raffle ticket only, because they were $10 each. And with that one ticket - I won the GRAND PRIZE. $5000! FIVE THOUSAND DOLLARS!!

Oh my gosh ... I was literally in tears when I drove over to sign for it. My peanut will get the bed she needs, my monkey will get a good Christmas after all. And we will DEFINATELY be donating a ton of toys and such to Toys for Tots this year. :)

Sunday, November 2, 2008

Koda, AKA "Big Fat Doggy"

Our older dog is 9 years old, she's a mixed husky/beagle. She is furry and adorable. She also has a large tumor coming out of her girly bits. She goes first thing Monday morning for surgery to have it removed and biopsied. The veterinarian is cautious when talking to me, he says she's old and it looks "involved".

Please keep Koda Bear in your thoughts Monday!

Monday, October 27, 2008

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!

Tuesday, October 21, 2008

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.

Thursday, October 16, 2008

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!



Tuesday, October 14, 2008

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!!

Monday, October 13, 2008

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 - - 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. :(

Wednesday, October 8, 2008

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??

Tuesday, September 30, 2008

Amazed by Intolerance

I sell on eBay, it's what I do. There's even a little link there, on the left side of this screen, to my eBay store. So every Monday I go shopping for inventory, and I never cease to be amazed by people's intolerance of disabled persons.

One store I go to frequently hires disabled adults. It is a great program, and they get to learn basic job skills. Yes, they are sometimes louder than necessary and even, quite frankly, rude. I understand that social skills are part of their disability, and therefore am always sure to be friendly and smile, even when I want to tell them to back off and let me shop in pease please. ;) The other customers are not always so friendly. I overheard one lady complaining to the manager about all the "retarded people" working in the store. She said that she understood that "someone has to hire them, I suppose" but they should be working in the back room, and not up front where the public shops. Okay, to be blunt, you're shopping at Goodwill for gosh sakes, not Nordstroms!

This Monday I went to a different store. I parked my van, which has Peanut's wheelchair lift on the back of it, as well as stickers of our family as little cute stick figures.

A little old lady came up to me and said "Do you really have a child in a wheelchair? Is that what your stickers mean?" I said yes, my daughter has cerebral palsy. She said "Oooh .. the poor thing. That must be so hard!" I fumed silently for a minute, and then explained that she does not need pity, she is a perfectly happy and wonderful child. She looked agahst and said "You mean to tell me that she's not SAD about being disabled? I don't believe it". I said that she probably doesn't even know she's disabled. She is happy and active and smiley and loving.

Then all hell broke loose. The lady went on to tell me that her sister had a "mongaloid child" and she still feels sorry for her sister to this day. The child is now 49 and she says that her sister is lucky the "poor mongaloid" lived that long. Ohhhh hell. So now I take it upon myself to explain to her that "mongaloid" is NOT a term that anyone uses anymore. That the child has Down Syndrome. That the child is probably not a "poor child" unless her mother is as intolerant and ignorant as this lady!!
I shuffled my indignant butt into the store and shop myself back to normal. Who SAYS things like that???

Tuesday, September 23, 2008

Smiling Beauty

Does this smile not melt your heart? Click on the picture, you can see it in real life size. Those eyelashes, the gorgeous hair ... as my blog is titled, she is definately a New Kind Of Perfect!

Thursday, September 18, 2008

School, IEP, Therapy, and More!

I truly think that IEP's were invented to drive parents insane. I have met very few parents who like IEPs, or who don't dislike them. They are frustrating and tiring.

We need to have our annual IEP for Peanut soon. Before we do, I told the teacher that I wanted to meet with her and discuss my goals/hopes/etc. for this year. I don't want to go into another IEP and get blindsided by what they think her goals should be. For some reason they are insistant on trying to get her to eat orally. We are not that concerned about it! We are on a break from feeding therapy, as all it was accomplishing was frustration. So for the school to have an oral eating goal is silly.

Tomorrow I meet with her teacher for an hour. She is new this year and seems very open to discussion. She is helping me get Peanut mainstreamed, which seemed impossible last year. I hope that she'll listen to me about my hopes for Peanut. I want her to be shown more switches and picture boards (PECS) and such. They seem to fight me on things that might actually cost them a dollar or two.

It is so frustrating to be the only person seemingly fighting for what my child deserves! She is such an amazing and incredible being, and she deserves the world.

Saturday, September 13, 2008

She's so sweet, even the bugs bite her!

Peanut has two big bites! One on her thigh, and on one the edge of her ear. The one on the thigh just looks like a normal mosquito bite (there are a bunch at her school playground). The one on her ear probably was the same, but now is quite swollen and red. We'll see how it looks in the morning, but I'm thinking I'll take her to the walk-in for some antibiotics. It definately looks worse than a normal bite. Since she can't tell me if it itches or hurts, I have to guess. She has been tugging on the ear all day, so I imagine it's not comfy.

Poor Peanut!

Editted to add: I ended up taking her to the Urgent Care. Her ear was hugely swollen, and there was a red streak heading from it down her neck. The dr diagnosed cellulitis, and started her on Keflex. I am to take her to our regular pediatrician on Tuesday, and to the ER if I notice it looking worse before then. Poor peanut! All this, from a mosquito bite!

In Memory of Stacey

There was a beautiful woman named Stacey that I have had the pleasure of knowing online for about 8 years now. Unfortunately, I never got the chance to meet her in person. She was diagnosed with a brain tumor in 2003, and went on to fight it with all her might. Our dear Stacey lost her battle recently. Please keep her five children in your thoughts, as they struggle to figure out how to live without her. Here is a great article on Stacey.

Entering flu season for sure

I spent 6 hours in the ER on Thursday with Peanut. She was so phlemy that she kept retching hard enough to throw up, and she couldn't keep down her formula or pedialyte. I took her in for IV fluids, and then we went home. Luckily her metabolic blood work looked good, or we would have been admitted.

Then we spent the day cuddling on the couch. Of course, that means Mommy is now sick too! There's no rest for a tired mommy. :(

This morning I decided to give her all her meds first, and then wait 30 minutes before giving her morning pedialyte. She immediately spit up the meds. I re-dosed her cold medicine, hoping to knock off the phlem at least. She has managed to keep that down, so I am going to attempt pedialyte.

As a Mom, I don't think I ever realized how many things I would do that are SO gross, yet have become second nature. Peanut is a big time retcher. She always retches and gags, and sounds like she's going to puke. I know the sound of stuff actually coming up, verses just sad retching. This morning I didn't have a towel nearby so while yelling for Monkey to bring me one, I cupped my hands and caught it all. ICKY!!!

It's going to be a long sick weekend. I need to run to WalMart and stock up on cold meds, and then do the regular diaper/soap/etc shopping. What I really WANT to do is take a long nap!!

Please keep Peanut in your thoughts. If she continues to spit up her pedialyte today, we'll end up back at the ER. :(

Wednesday, September 10, 2008

What's worse than a snotty kid?

A snotty kid with a seriously overactive gag reflex and dysphagia. The nose gets all stuffed up so she can only mouth breath, so she stops swallowing. That leads to drooling, which leads to more choking and retching than normal.

It SUCKS. Peanut has been in school for one week exactly, and she came home snotty today. I hate that parents send in sick kids! I can understand a slight cold, but the other day one girl in her class was green snotted and icky. Keep the poor thing home, and hopefully everyone else won't get sick too!

I foresee even less sleep than normal tonite. I am tired already, I'm sure tomorrow will be loooooong. Good thing it's almost the weekend! If I have to clean up any more spit up, I might just lose my mind.

Wednesday, September 3, 2008

First Day of School

Ahh, summer is really over! The kids first day of school was yesterday. They both had great days, thank goodness!

Monkey is in third grade now. He is such a mature and awesome boy! He really makes me proud. He has the same teacher as he had last year, and we love her! She was thrilled to have us, as it means I will be her Room Mom again. Yes, just call me Susie Homemaker, but I love it!!

Peanut is in the same classroom she's been in for two years, since she turned 3. The class she's in goes from age 3 through the end of 8th grade. It's the only severely handicapped class in the district that goes through junior high. There are about 8 kids, and 6 adults (Teacher and aides). I wasn't happy about her going back to this classroom, as prior to now it wasn't kid friendly. Peanut is the highest functioning kid in her class. Most of the other kids are not able to crawl or play with toys or interact in any way. The classroom was dedicated to that type of child, and Peanut had outgrown it. I wanted her transferred to the same school Monkey goes to, and put in a regular special ed class. I also wanted her mainstreamed for a portion of the day.

Turns out that they have a new teacher in her class this year. She's incredible! The classroom is TOTALLY kid friendly, desks at wheelchair height, etc. Centers are set up, it just looks great. I know the teacher from the past, and I am thrilled with her being the teacher. So for now we are going to stay there. Also, I talked to the Director of Special Ed, and Peanut will be mainstreamed for half of the day every day, starting in October!!!

I am so relieved that everything fell into place. I was really geared up for a big fight against the school district, and have even already contacted an advocate! Now I won't need all that, thank goodness.

Monday, September 1, 2008

Sleepy Morning

Last night was a dreadful night. Some nights, Peanut is just UP. She was really retchy, uncomfortable, and awake. Finally she seemed content, but still wide awake. She wanted to be cuddled on the couch, and loved on. She didn't need toys, just love. But at 2 in the morning I want to sleep! I put her down on the living room floor with a toy to try and get a little rest on the couch, and the crying resumed. Daddy and I traded off who was holding her and who was cat-napping, but in the end no one got much sleep. It's a good thing it's a holiday Monday, and there's no work for Daddy today. That would have been miserable!

Peanut and Monkey go back to school on Wednesday. It has been a fun summer, but I am glad to get back into our normal routine. I think Peanut has grown bored of me anyway, as she is getting fussier earlier in the day now than normal.

Peanut is going to be a KINDERGARTNER!! Can you believe it? She is going to the same Severely Handicapped class she's been in since she turned 3. I am working on having her transferred though, and the school district is really fighting me. I want her in a regular Special Ed. class, where she's not the highest functioning kid. Right now she's just about the only kid in her class aware of her surroundings, much less interactive. I want her around other active, functioning kids! I also want her integrated for a bit (maybe an hour a day?) in a general ed kindergarten class. The school district is pitching a fit. I know that she is not going to learn her ABC's or how to write her name, at least not now. But she IS capable of socializing and sitting with other kids her age. I think she needs that. I think she DESERVES that! So, the school district battle is waging.

I am still trying to figure out how to get my blog all set up how I want it. I will try and post pictures later today if I get a chance.

Thanks for checking in with us, I know our blog is new and kind of dull still. :)

Tuesday, August 26, 2008

Starting From Today

I have put off starting to blog because I don't know how to start! Do I start with Peanut's history? Do I start with a recap of our family? Or do I just start? So here I am, starting with today. I'm sure that history will be recapped as I blog, but I am going to stop worrying about that and just type.

Peanut is tube-fed 100%. She can eat, functionally she is able to chew and swallow. But she won't. She refuses. She will spit food out, turn her head, refuse to open her mouth. If you manage to get in a bite that she didn't want, she will gag on it until she chokes it up. Fun! She has been going to feeding therapy at the children's hospital, but it's not making any progress so we are taking a 6 month hiatus.

Enter mommy guilt. "What if I keep taking her, and she suddenly starts eating next month?" Arg. I had someone ask me about hyperbaric oxygen treatment today. No, we have not tried it for Peanut. It is EXPENSIVE. Insurance does not cover it. And I cannot find enough supporting evidence that it works for kids with Cerebral Palsy.

Which brings us to Peanut's latest diagnosis. For lack of anything else, she is officially diagnosed with Spastic Diplegia Cerebral Palsy of Unknown Etiology. Funny that it's spastic, because MOST of her is hypotonic (low tone). As in, the opposite of spastic. Her ankles, however, are high tone. It's important that we find high tone somewhere because that is a qualifying diagnosis for her therapy and insurance purposes. It's complicated and makes no sense, but she luckily has the high tone in her ankles so it works. Overall, she is so loose and floppy. She can sit up, and crawl. She can walk like a mad woman in her gait trainer. But she cannot stand unsupported. She has AFO's (ankle braces), and is getting knee braces (to prevent hyperextension). She is SO loose, her hips and knees pop in and out of socket. She actually likes that feeling, and does it on purpose. Ick, I know! Between her popping her knee in and out (click click click) she grinds her teeth. Constantly. It's called bruxism technically, and it is SO annoying! She gets a lot of sensory input from it, evidently.

The kids go back to school a week from tomorrow. Peanut is starting kindergarten! She has been in school since she turns three, but it's big that she's a KINDERGARTENER! :) Monkey is going into third grade. It makes me feel old to have a kid that old.

I better go get dinner made. Daddy will be home soon. Peanut has a nurse here today, so I went and got my nails done and did the last back to school shopping. I better go do SOMETHING to prove I didn't laze around all day. :)

Tuesday, July 29, 2008

A New Kind Of Perfect

This is my first entry into the world of blogging, but not online journaling. It has been a while however, so it's like starting over! This little spot on the web is where I will update on Peanut and her medical issues, Monkey and his life, and everything in between!