"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, October 28, 2009

Update and Some Fall Pictures

EDIT:

I just got a call from the GI doc's office. Marissa's blood work came back at normal levels for her thyroid and negative for Celiac disease. Woo Hoo!

On the H1N1 vaccine front, apparently counties are requiring proof of residency in that county for the shots. I called three different counties and they all had the same answer. They said it is that way across the board. The last person I talked to did say that our county has tentatively scheduled four clinics in about two weeks. We are also still hoping that Marissa's ped will get the supply they were originally supposed to. Her ped did say if they do get the shots, they will reserve one for her and we will be notified immediately. So, we'll just wait and see. And pray.

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ORIGINAL POST:

As Fall turns to Winter (for the next two days, at least) I wanted to just post a little about what has been going on in Casa de Marissa.

First, Jeremy and I have been struggling the last month about whether to get Marissa the H1N1 vaccine. So many pros and cons to consider, and I won't go over them again (for the sake of those friends who have read all the Facebook discussions) but needless to say, it has been an agonizing decision to make. Kids are in a high risk category. Special needs kids are in an even higher risk category. UGH! I'll spare you all the details but let you know that we have decided to go ahead and get her the vaccine. That is, when it comes in. I have a message in to her pediatrician asking when they are supposed to get it. There is a shortage and delay in this county, while surrounding counties have plenty. I'll never understand how that happens, (politics and BS) but we may have to go to a different county to get it. I hope not. I was thrilled when her ped told me they would be getting it so we wouldn't have to stand in a long line, in the cold with a bunch of people who may already be sick, but now they are not sure.

On a related note, Jeremy and I have also struggled recently with the decision of whether to go to a Halloween parade and party being hosted by some very good friends of ours. We went last year and had a blast. Marissa is old enough this year that she can understand the concept a little better and even walk up to doors to trick-or-treat, so we were excited when we got the invite again this year. I had been thinking that this H1N1 stuff was being hyped a lot through the media. While I still believe that to be true in part, I also can't argue with the numbers. Again, I'll spare you the details but in looking at the number of infected kids and, on top of that, infected kids with special needs, I can't deny that this is a big problem. Marissa is prone to pneumonia and that is a very common complication of this strain of flu. This stuff is not to be taken lightly.

So, back to the Halloween party. After much agonizing, a little lamenting the fact that once again, we have to do things differently because of Marissa's special needs, and a few tears (mine, not Jeremy's ; ) we decided not to go to the party. It breaks my heart because I was looking forward to seeing my friends. And I was looking forward to Marissa being around people. She loves people, especially kids. She is at a critical stage in her development where socializing is very important. But we just felt we couldn't risk it. We just don't know what everyone else has been exposed to. I know we are making the right decision, it just stings.

I hate being this paranoid. I always told myself (before we even made the decision to start a family) that I would not be a germaphobe parent. If a pacifier fell on the floor, pick it up, dust it off and pop it right back in the kid's mouth. A little snot running down my kiddo's face was nothing to get excited about. Letting my kid play with the toys in the doctor's office waiting room would be no big deal. Little did I know...

OK, enough of all this Hamthrax talk. (thanks Emily! ; )

Marissa is actually doing pretty well. Since about the middle of August she has been dealing with some constipation issues. It just popped up right out of the blue. We now have the symptoms controlled by adding some extra fiber to her diet and putting her on the tiniest dose of Miralax but we were still concerned as to why this showed up out of nowhere. We recently went to see her GI doc and he assured us that it can happen with kiddos who are strictly g-tube fed. It seems that their systems sometimes hit a point where they just need more fiber. She is on Pediasure with added fiber but it just started being not enough for her. After all, she doesn't eat apples or broccoli or anything of that nature which most people eat to regulate their systems. He did order some blood tests for Celiac disease and thyroid issues. He said he didn't think she has these, he just wants to rule them out. He said kiddos with underlying conditions like Marissa who have constipation problems are more prone to have Celiac disease and/or thyroid issues. I took her for that test on Monday, so we don't know the results yet.

We finally saw three days straight where Marissa had no behavioral problems. She was such a good girl over the weekend and it continued through Monday. Not even one timeout!! It all returned to normal yesterday but we were encouraged by our three day break. She hasn't had even two good days in a row for probably about a year now! I know we might not see that phenomenon again for a while but it was just good to see a flicker of light at the end of the tunnel, even if only for a few days. : )

I am so pleased with how much Marissa is vocalizing and verbalizing. Yesterday morning we watched one of her favorite Elmo movies as well as a Signing Time video and she recited almost all of the words! In her own, unintelligible way for a lot of the words, of course. But the try was there! I know this also means that she is watching the videos enough that she has now memorized them, but I can handle that! She really only watches her videos in the morning and then we turn the T.V. off until Daddy gets home. But what she watches, she retains.

We also found a way to keep Mommy and Daddy from feeling like we jumped in the tub with Marissa at bath time. We started singing some of her favorite songs as well as counting to ten and saying our ABC's and she did not splash nearly as much! She sings and counts and recites right along with us! I'm not sure why it took us so long to discover this but I am just glad it works... for now. She is so cute when she counts to ten! I love the way she says "four". She sounds like she has a Boston accent when she says it. I'll have to see if I can catch her on video.

Lastly, I'll leave you with some Rissa pics from the last couple of weeks.


Running...

and running...


stopping to pose...


and a Daddy kiss break...


and, back to running!



Grinnin' fool




Beautiful girl!

7 comments:

Nana and PaPa said...

Ah...the ups and downs, the breaks from misbehavior, the discoveries of what works and doesn't work, the difficult decisons that sometimes have to be made and the joys of growth in our children is what keeps life moving and flowing. As I raised you and your siblings I remember the challenges and decisions made...sometimes maybe not the right decisions by others' standards, but I did the best I could, as I now see you doing also. The joys of parenting!! Love you all and LOVVVVE the pics of Miss Rissa Roo!
Love,
Nana & PaPa

Colleen said...

Beautiful pics. She is such a happy girl!
The h1n1 shot decision has been incredibly difficult for me too. We can actually get them this week at the little man's school, but I'm still on the fence. Ughh, what to do, what to do! Are you all getting the shot or just Marissa?

I'm so sorry to hear that you have to miss out on the party. This whole flu thing ruins all of the fun! Maybe you can still have a nice time as a family for Halloween. Sometimes that's the best way to spend it :)

The VW's said...

What great pictures!!! Run! Marissa, Run!

H1N1 has be crazy too! I am constantly nagging my other boys about proper hand washing technique and asking them if anyone was out sick from their class. Everywhere I look I am actually starting to see "germs" on things. I took our older boys for their physicals at the doctor office this week and of course they touch everything, so I kept saying "you probably have about a million grimey germs on your hands now." Yes, they are sick of me, and actually, I'm sick of me too!

I was never a germaphobe until I had Gavin. The 10 second rule applied at our house! But, now I'm driving myself nuts!

I'm sorry that you have to miss the party! Making these decisions is hard to do! I hope you guys enjoy yourselves, whatever you do! And, I hope Marissa is able to get the H1N1 shot soon! We are on a list for Gavin too.

HUGS!!!

Katelynn said...

Oh my goodness she is SUCH a cheese ball!!!!!!! I love her.....she is changing so much and so fast!!!! :D
Love you all very very much!!
Aunt Taters

Michelle said...

I still think you are making a good choice not to go. But it still sucks.

I LOVE the pictures! She is a cheese ball!

Love,
Auntie Chelle

Queen Mommy said...

I am kind of sad that Lily won't get to wear her unicorn costume trick-or-treating this year either! You are making the right decision, even though it's not the one you hoped for. Marissa will have fun just wearing her Elmo costume at home! H1N1 is some pretty freaky stuff, and there are so many kids with it in the hospital here right now. Good news about the thyroid and celiac tests! As far as constipation goes, can you give her a little ground flax seed mixed with water in her g-tube (flax seed oil would work too)? We used to do that with Lily.

Dana said...

Wow lots to comment about. Laneah is on pedisure as well. We do Miralax too. I give her 1/4 of a cap full every other day. This works well for us. The doctor told us that this was very gental on the system. It's like taking nothing.

HOpe you all can get the shot soon.

Sorry about Halloween. Rent fun movies instead. Bake something fun together. Have your own party. Dress her up anyway.
Take care.