This week...

Just to update you all on where we've been the last week. Marie finally had a good day yesterday. She has vomited at least once a day for the last 7 days, but yesterday she managed to keep both lunch and dinner down. She's still nursing primarily, we try to get what baby food we can down her but she's lost a lot of interest.

We had physical therapy this morning. The therapist is concerned about her legs, she wants us to ask about splints at our Dec 6 appointment. Marie's feet are turning in more severely than before, and she's worried about stress on the joints.

Marie is still happy, but there seem to be days now where she just doesn't feel well. Her slouchy-ness is becoming more pronounced, and she really is much like a newborn a lot now. When she is tired she looses head control, fists her hands like a newborn, and doesn't move her arms and legs much. She wants to be held almost all the time, and Luke and I give into that a lot. We also have sort of stopped using the high chair, she just doesn't sit well enough to use it. Of course the vomiting is discouraging because it's uncomfortable for her, and also because we're really concerned that she hasn't gained wait in nearly 3 months now. We're going to talk to our family Dr about some sort of food supplement, or if anything can be done to help her to gain.

She's sleeping in our bed every night now too. She nurses almost non-stop throughout the night, and the upside to that is that she's able to get a pretty good meal in. We're also wondering if maybe she has "night terrors" since she wakes screaming a lot, especially if she's not touching Luke or I.

There are some good things though. When she's well rested she's doing well with standing. She also can pull to sitting from a semi-reclined position and she is starting to use her arms to catch herself when she tilts.

Both Josie and Marie are finally over their colds, and Josie's ear infection has cleared up (though we still have the Ear/Nose & Throat appointment on Friday).

Josie had ballet yesterday and is really becoming quite the dancer. She knows so many moves now, and it's a ton of fun to watch her. She's also become a huge helper with Marie (helping her to stay sitting on the bed, helping her hold toys etc).

I'm taking a lot of pictures, though most are still on the camera... I need to get them posted soon.

That's really about all for us here, still doing day to day. We're looking forward to the appointment on the 6th but dreading it at the same time. Our days tend to be sort of a roller coaster, and I'm sure we're not always the best company, but we're still just trying to focus on the good things that happen (which is not to say that we don't get completely discouraged and loose it sometimes, we're just lucky enough that we don't do it at the same time).

Hopefully everyone had a really nice Thanksgiving, we did. Until later, xoxo.

Occupational Therapy and more

Last time I wrote we were meeting with the occupational therapist. We had that meeting, and he showed me some more exercises to work on with Marie. She seems to have a problem with her reflex to catch herself when she starts to tilt. She'll lean, but she doesn't reach out her arm to brace and catch herself. He was concerned about that simply because she could really hurt herself toppling from sitting to the hardwood floor. So, not only are we working on teaching her that reflex (extend arm, open hand, brace) but we have to be really careful with her. He also observed that she tends to leave her hands fisted up like a newborn would, so any exercise that forces her to open her hand fully is good. Plus side, when her hands are open, the work just fine. She can pick up all the tiny things and insert them into her mouth, so I'm still on tiny toy patrol (not that I would have stopped, but man, you'd think eventually I'd have collected them all. We seem to have an endless supply of things small enough to fit through a paper towel roll!)

Head control was discussed, as was posture, because sadly these are two things Marie is really struggling with. So, we'll continue to work on it. The Oc. Ther. says he'll probably just work with our Phys. Ther. rather than coming to see us weekly. I also found out we can get a lot of this through BOCES so I'm going to be calling on that. Our insurance only covers up to so much physical therapy and we'll be needing more than that so it was nice to learn that we can do that (thanks tons Jess for checking into it for us).

Marie, though her body doesn't work right, is still smiling all the time, and a happy happy girl. This is a huge comfort, as the physical things we can easily overcome or make modifications to get by. I'm so glad she's happy, because I am willing to carry her wherever she needs to go.

Josie's ear is getting better (I haven't seen any signs of infection for a few days). We will have to go up to Ft Collins to the Ear/Nose/Throat Doc though on Nov. 30. She'll have a hearing test, and then we'll look at why she continues to have infections. Britt, we should do lunch that day. I'll call you :)

Josie also was assigned a part in the church Christmas pageant this year. She will be Angel Number Three. The program is on December 16, so if you can, it will probably be a kick to see her perform!

Marie has been doing slightly better with vomiting. She made it 4 days without being sick, but got sick last night. I've been noting what she's been eating when, and the times, but am beginning to see a correlation between the severity of her tremors and her vomiting. It seems the worse she is shaking the more prone she is to getting sick. I've noted this and will be bringing it up on the 6th at our appointment.

All in all we're doing okay. We actually had a few days where all felt normal this week. One day Josie and I walked to the park with Marie in the sling, and yesterday we surprised Luke and Papa Steve with Subway while they were working. I just treasure those little moments, and try to create as many of them as we can. As my cousin said, we too have developed an appreciation for how terribly fragile life is. How grateful we have become for every day. We truly have been blessed, not only with Marie and Josie but with the amazing support of everyone in our circle of family and friends. I've been told how strong we are, but it is only because of the support we have that we are able to cope so well. Thanks to each and every one of you. Everyone have a wonderful Thanksgiving, much love- Shan

Update on Marie and Josie

Over the weekend Marie had a fairly rough time. She vomited three times on Saturday afternoon, and on Sunday she was sick 9 times total, 8 times from 5-9 pm. She couldn't even keep water down, and, since she can't go for longer than 8 hours without eating/drinking we were getting pretty concerned. Finally, after a bath she was able to nurse and keep it down (we were only about a half hour from having to go to the ER and get an IV put in at that point).
Monday morning we were off to the clinic to make sure she wasn't suffering from an ear infection, urinary tract infection, or sinus infection (basically a search for anything that could be causing the vomiting). It took them 4 tries to put her catheter in for the urine collection (HORRIBLE) but luckily all the tests came back negative. That means we're suffering from "unexplained vomiting" a symptom of mitochondrial disease that is sometimes seen. Marie also has been 16 lbs sine the beginning of September so she hasn't gained weight (though she got 2 inches taller) but as of Monday morning she's lost 2 ounces, putting her at 15 lbs 13 ounces or so.
Monday got even better when, at about 6 pm as I was fixing dinner Josie let out a blood curdling scream. I ran into the living room to find her hand covered in blood, and a good stream of it coming from her right ear. Luckily Luke got home just at that moment and I took Josie to the ER while he stayed with Marie. That's right, 2 trips to the hospital for me on Monday. I apparently won some sort of crap lottery.
After an examination we learned that Josie had only scratched her ear canal with her finger pretty good, but her ear drum etc. is fine. The downside, she's got yet another ear infection. We'll have to contact her ear, nose and throat doc in Ft Collins to determine what to do about this. She's had at least 10 ear infections (I've actually lost count) since getting tubes in 2 years ago.
She was hilarious while being examined though. She explained very seriously to the Dr that she had boogers in her ear and she was simply trying to get them out with her finger. She also explained to him that she has bones in her skin (she must have thought he needed to know about that) and that she knows she has an ear infection when there's sugar in her ear. She also promises not to stick her finger in her ear again, but since I've had to get on her about it a time or two since I'm not sure how sincere that promise was.
Monday Marie didn't vomit at all, which was really good. Sadly, yesterday evening she was sick again about 15 minuets after eating dinner, and she vomited again this morning after nursing. I'm documenting all of this in my little day timer to take to the Dr's at Children's when we have our next appointment.
Marie did have her second physical therapy appointment yesterday afternoon, and aside from her being terrified of the physical therapist (stranger anxiety is setting in) she did pretty well. The therapist points out Marie's strengths, which helps me to feel a little better.
We will have our first appointment with the occupational therapist on Thursday, apparently he specializes in fine motor skills.
So, that's where we are now. I'm struggling to stay positive as right now I'm overwhelmed. Her vomiting is really discouraging, especially since all I can do is hold her and coo to her when that's happening.
Thank you to anyone who happens to read this, at this point it's more of a therapeutic thing for me to type out what's been going on and get it "out". Also a huge thanks to my friends Britt and Jess who have magically been there just at the moments when I needed a boost. Until later... much love.

And more....

Sleepy girls...










Josie dressed herself, and it was too cute not to take a picture.

























Where's the food!?












Singing in church for the Mission/Harvest Festival. Josie is on the far right, in a purple dress. She's right next to the little boy in a green polo shirt.

And More...

Do you think she looks much like her Daddy?





















A very cranky bunny!










The sisters...












I think this may be one of the best pictures I have taken in a LONG time!

More...

Annoyingly enough, blogger will only let me post 5 pictures at a time, so here's the next installment.







Sly little kitty cat.











Head in the clouds.











I have a balloon!











The lady bug and the dragon!


The always beautiful Josephine.

Pictures...

I'm way behind on pictures, so, here we go...






Matching pj's!!!















Josie at ballet, she has the black top, pink skirt and white tights on....



Such a pretty ballerina!!!

Bow head!

Even she thinks it's funny (Marie is 7 1/2 months old here)!

Just to take you back, here's Josie in December of 2004 at 11 months old sporting a fetching gold bow....

Updates

So, I still haven't gotten our Halloween photos off the camera. It's on my to do list, sadly that list is pretty long.

I did want to update everyone on where things are with Marie since I know many of you are concerned. Since getting home we started her on a "vitamin cocktail" as recommended by the Dr's at the Metabolic Clinic at Children's. Unfortunately, these did not agree with Marie and she was vomiting with frightening regularity. Despite giving the vitamins with meals she just couldn't seem to beat the nausea so the Dr's took her off them. They feel that the forceful vomiting isn't worth the possible benefit from the vitamines at this time. If she seems to to better with the throwing up we'll talk about putting her back on them then (Marie's been throwing up the last few days, but I think it's due to her shots that she jsut received). She has gotten her flu shot, and on Tuesday we finally got her caught up on her 6 month vaccinations as well.

This morning was Marie's first day of physical therapy, and according to the therapist she's doing relatively well (all things considered). She told us that developmentally Marie is only about a month to two months behind. Mentally she is where she should be for an 8 month old as far as she could tell. We now have some exercises to start which will help increase Marie's muscle strength, balance, etc. Our goals would be to get her sitting independently, and standing while holding on to things.

Marie will also do some occupational therapy (hand eye coordination and that type of thing) but we haven't met with them yet.

Luke and I are still overwhelmed, but I think we're beginning to find a way to live with the changes in our lives.

Josie is good, although today she's come down with a rather nasty head cold. She is huge in keeping us upbeat, she's always doing something funny to make us laugh. She has an understanding that God put Marie together a little differently, and Marie needs extra help to do a lot of the things that Josie can do. We've been making sure Jo gets lots of individual attention from us as well.

So, that's where we are today. We still have an appointment scheduled for December 6 at Children's and this is when we'll get the test results. If they all come in sooner they'll call us and we'll go in early (I don't really see that happening though).

On a side note, both Rie's bottom teeth are in, and today she said "Da-da". Josie can also read the word "football" on her own, which is not the first word I would have guessed she would read, but whatever. She's a fireball.

Happy News...

Finally, it seems like we have some good news to share! On Thursday (November 1) Marie cut her very first tooth! The bottom right has come through, and the bottom left is lurking right below the surface. She is so laid back and non-fussy we didn't even realize she was teething! Now that the one has cut through she's been a bit more fussy, but nothing Tylenol can't handle. So, hooray for teeth! It's so wonderful to have a happy milestone to post about after the last month.

She keeps playing her tongue over the tooth, I think it still feels funny in her mouth. She gives the best grins though with her tongue half sticking out.

I'm going to try to catch a picture of that, and download our Halloween pics this weekend. Josie had a blast as a lady-bug, and got more candy than any three year old could handle. Marie was a dragon, and while she didn't really get the whole Halloween thing she was pretty cute. Hopefully I get those up this weekend....