Peanut got better test results today than I did ....

She did AMAZING at her eye exam today! I was so proud of her. She hated the drops of course, but stopped crying the minute they were done putting them in. She has huge pupils normally, so her eyes only dialate a little bit. He said that her far-sightedness is GONE! She has totally normal near/far vision. Her astygmatism is only a tiny bit different, which is great news! He wrote a prescription for new glasses but said to go ahead and wait until we need them, because it's such a minor change. WOOHOO for a good appt!!

Oh, and I must mention .... I was holding her on my lap, facing the Dr. She was using her arms to push away his tools (go Peanut!). I managed to keep her arms under control, but then WAM. Directly in his crotch, she kicked. He scooted back on his stool and said "Oh crap!" LOL She had good aim. ;)

Now for my results. I got my MRI results back and they aren't great. :( I don't know what it all means, and my Dr is sending me to an orthopedic surgeon for follow-up. It definately shows osteoarthritis. Chondral thinning, bone spurs, and bulging discs in my spine. My spine and right hip are "full of arthritis" as the Dr put it.

Why the right hip, when the left hip is fine? Because that's the hip I carry Peanut on. I try to switch her to the other hip, but it doesn't work. She just slips down. So for 5 and a half years I've had a heavy lump on my right hip, and my body isn't happy about it.

I am nervous as to what the orthopedic guy will say. I definately don't want any more surgery!!! In the meantime, she told me to take over the counter pain meds and she'll call me in something stronger if I need it. You know, for those nights when I don't have to get up through-out the night with Peanut ..... ;)

Off to the opthamologist

Peanut has an eye exam with a new opthamologist today. It's a dialated exam, which is always a bit horrible. She hates these appointments! Her eyes change so much from year to year that I never know what to expect.

I am so nervous. I can't wait until this morning is over!!

One last picture

Somehow I deleted this one. I wanted to post it and ask other moms of low tone kids if your child has bat wings like this? I don't know how else to describe it! LOL Her shoulder blades seem to poke out sideways like this, under her arm. Do your kids do that too?? The PT says it's just ligament laxity, and nothing to worry about. It definately looks peculiar!

Picture Palooza!

Evidently our old dog decided she wasn't going to move as I tossed all the dirty laundry in one corner! She continued to sleep here for another hour. LOL


This is Monkey, showing off his solar system project in class.




Mmmm ... we had a green jello poke cake for St. Patrick's day!! :)



Don't laugh too hard at my decorating. Seriously, ignore that pathetic blue thing that was supposed to be a clover. ;)

We also had green pancakes one day for St. Patrick's Day. Yumm!

What's cuter than a princess with curls??

When she really laughs hard, she smiles so big her eyes squeeze shut. Don't you just want to pinch those adorable cheeks!!!

Seriously, too cute. Deliciously cute!!

And all that hair .. curly, think, out of control.

Laughing her head off. Seeing this smile makes EVERYTHING okay!

Check out my hair!! Since I've been getting real food through my g-tube, my hair and nails are growing like nuts!

Peanut in her new big girl bed. A turned around Ikea day bed!

Seriously beautiful sleeping angel!

Don't you just wanna snuggle her!

Those are some recent pictures, I realized I hadn't posted many lately. I might be biased, but I think she is truly the most adorable thing EVER!! :)

I have our Little Heroes photos back too, I will get them posted soon.

Thanks for checking in on us!

No wonder we sedate her for MRI's!

Oh my gosh, I had no idea how loud and claustrophobic the MRI machine is! I had one today on my cervical spine and my hip. I have a pinched sciatic nerve and other mysterious pains in my right hip and leg, and my lower back. I know it's from carrying Peanut. I always carry her sitting on my right hip. It just doesn't work on my left hip! I've been going to PT for the pain for over a month with no relief, so I was sent for an MRI today.

Wow ... it's LOUD! And you have to lay perfectly still. In a position that was triggering the exact pain. OUCH! 17 minutes for the spine scan, and then 17 more minutes for the hip scan. I was practically in tears by the time they were done.

Now I understand why we sedate Peanut before we MRI her!!

Yay for weight gain!

Wouldn't it be nice if MY biggest problem was that I lost weight and the doctors were upset? LOL My peanut had lost weight at her last metabolic appointment and they weren't very happy about it. So I was reaaaaaaal nervous to have her weighed at her GI appointment this week. Thank heavens she was back to her normal weight!!! That means that she's doing fine on the baby food diet after all.

We have set some goals for her, I am hoping they are not too lofty. We are going to try weaning her off two medications she has been taking for her stomach. She takes Nortriptalyine for retching and Neurontin for gut hypersensitivity. Since we took her off the Beneprotein and started giving her real food and no soy/dairy, she rarely retches. So we are going to try her off these two meds (of course, trying one at a time) to see how she does. I would love love LOVE to get her off some medications, she takes too many!

Secondly, we have a goal that by the end of summer, we will have her completely on a blended baby food diet, and no formula! This is so exciting to me. Even if it's all going through her g-tube, it makes me so happy to feed her food. Fruits, veggies, meat, baby cereal. It's just so much more "normal"! If we can get her on an all food diet through the day, then she would only need one bolus of pedialyte in the middle of the night for hydration. How amazing would that be?? The GI and the dietician want to start working on this at the beginning of summer. That way if we have some rough nights, we won't worry about her and her brother, The Monkey, being too tired for school. Smart thinking, huh!

So it was a great appointment this week. It's nice to leave an appointment happy and hopeful!

I ordered Peanut a new MedicAlert bracelet today. Her account needed to be renewed, and (blushing in shame) she hasn't had a bracelet for two and a half years. Yes, I've paid all that time. Convinced I would call "next week" and order a new bracelet. Silly me! So today I did it. Can you believe that her wrist measures under 4.5" around?? SO TEENY! Anyway, all the information on her bracelet needed to be changed from the last one (no broviac or TPN thank goodness!). So in 7-10 days, we should have a new bracelet for her. And of course, it's purple. :)

Does anyone else have MedicAlert for their kiddos? It was so hard to figure out what to have engraved. I wanted every important thing on it, but obviously you can't fit it all. The nurse at MedicAlert told me what she thought was most important, and then I disagreed a bit, and we comprimised. LOL Her metabolic disorder needs to be on there, no doubt. She thought that developmental delay should be instead. I told them "They'll see that she can't walk, but they won't see that she's quickly becoming acidotic and going into a metabolic crisis". In the end, I won. It was tough to decide what to list as most important! Of course a latex allergy is at the top of the list. I hope I'm not crazy, and this is hard for other moms too. Sometimes I feel really overwhelmed.

All in all, things are going great. We just got our Little Heroes pictures back, so I will upload them here soon. I can't wait to share them, some of them are SO great!!

Stupid insurance people!

Okay, wouldn't common sense tell you that if you have a child with a neurogenic bladder (which I forgot to list on my last message) and she is catheterized all night, every night ... that you MIGHT want disposable gloves? Okay, let's say that the urologist told you that you as the mom don't need to be gloved and sterile, just "clean cath'ing". But home health nurses catheterize her 5 times a week. They are mandated that they have to wear gloves!

Yet our insurance company says that unless the patient is a quadraplegic, paraplegic, or has encopesis, you do not get disposable gloves.

HUH!?!?!?!?! Sure, they're not THAT expensive. But the little things that aren't covered, add up!

Stupid insurance company. I need non-latex gloves, in bulk.