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!