Wednesday, April 29, 2009

Brooklyn Update!

First of all, thanks so much for the calls, emails, etc about Brooklyn's doctor appointments yesterday. It was a LONG day, but we expected it, so it was alright. Thanks to my cousin Melissa and her family for taking Reagan after school! Lifesaver!
At SB clinic, which we will go to every 3 months for a couple of years, we sit in a room while a bunch of specialists rotate to us. It is nice, but man, that chair was not comfy. Anyways, we went in first thing to get an ultrasound done of her kidneys and bladder. I think sometimes we'll get her shunt checked out too with ultrasound, but we just did that 2 weeks ago, so no need this time around. I'll just give a little update about all the folks we saw yesterday to give an idea of how she is doing..... all around, GREAT!
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1. Neurosurgery - like I said, we just saw them 2 weeks ago. Her shunt seems to be operating perfectly, and her ventricles in her brain looked perfect. We PRAY this continues and we can avoid shunt revisions. We would be great with no more surgeries! They have checked her out every month since we brought her home, and now we have graduated to just seeing them at Clinic. All in all, great news.
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2. Urology - we didn't see the actual urologist, but the SB director there went over that stuff with us. Her ultrasound looked perfect. Kidneys functioning perfectly and no swelling of any kind. Her bladder is emptying well still, but we will keep with the 3 catheders a day for now.... probably for a long time. They will check her kidney reflux in about 9 months, but as of today it was a great report with no changes to what we are currently doing. Yay!
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3. Social Work - nothing. Not sure why she came. We shot the breeze about the weather. I guess it is just so we can ask for help if needed or something.
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4. Dietician - again, nothing. Once she starts solids, the dietician comes into play in case potty issues occur (mainly constipation I guess). But for now, she just asked about her nursing, went over her weight, etc. Funny.... Brooklyn now weighs right at 15 lbs, which is about 75th percentile for her age. The dietician tells us "she is a little overweight, but that doesn't really matter right now." Um, really!? Overweight!? What, is that due to her sedentary lifestyle or something? Should she be outside playing more? David and I just laughed when she left. Um, lady, statistically, a fourth of the babies in the world are 75th %tile and over, regardless of how much they weigh. That is just how it works. Doesn't mean that a fourth are overweight. Too funny.
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5. SB director - she rocks. We love her. She follows about 400 kids with SB, so this is her gig. She just kinda went over all the latest tests and stuff, made sure we didn't have any needs or questions, talked to us about research being done about SB, etc. She did do some specific checks on B's range of motion in her hips.... said she was doing great and didn't show any signs of hip dislocations.
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6. Ambulatory services man - I forget what he was called. Anyways, he is the guy that works with braces, crutches, wheelchairs, etc. He rotated a bunch of her joints and checked out her feet.... said he didn't need to be doing anything for her for now. :)
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7. Physical Medicine Doctors - we saw two, a resident and an attending. (I always feel like I know a lot about these terms thanks to ER and Grey's!) They spent the most time with her... kinda checking her out like her therapist does and watching her roll over, etc. The attending decided she does want us to come back and get fitted for a splint for her left ankle. Her left foot turns in quite a bit, and we want to help it straighten out before she is starting to stand and take steps. So, we will go back for more appointments for this. Go figure. :) I'm actually kinda glad.... our therapist didn't think they would do anything at this point, but it seems like the earlier we help it get straight, the better. So, soon you'll see her cute little boot on her foot. I plan to give it some bling if possible. :) This was really our only change from the appointments, and it was an expected one from our end. We couldn't be more thankful! All the doctors, even the physical medicine doctors, kept saying "she is doing SO great!" And, "She is just so beautiful!" One even said they were all talking about how cute she was in the hallway. Music to any mommy's ears. :)
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Just a few pictures of her latest "skills":
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We are working with her on "propping", both lying on her tummy and propping to sit herself up. This pillow on the mat helps her not scream the whole time!
Pushing up like a big girl!

This is her "throne" as we call it. Cheryl, her therapist, calls it my Baby In A Box. She has this new special pillow that helps support her "sitting", and the box holds it up. We aren't supposed to use her bouncy much anymore, nor her Bumbo ever. Those don't help her build strength, and we know that she has to be super strong to make up for any muscles that don't work so great in her legs. Sitting in her box helps her learn to sit on the floor with her legs out. She really likes it!

She is really getting into her toys and grabbing, pulling to her mouth. This is big time for her! She does favor her right hand over her left, and she shouldn't at this age. So, I have to make her use her left a lot. If she doesn't get better at it soon, we'll constrict her right hand. But, it won't come to that!
Mr. Elephant is her favorite right now!
Watching a little Baby Einstein from her throne.
Look at this li'l Chunk O Luv!! Her box pillow fits in her high chair, so she sits and plays here as well. Works on using the muscles it takes to sit in a chair with legs down, which is different than floor sitting. This is where we work most on reaching and grabbing for toys. She is SUPER happy in her high chair. Makes me super happy! But, she looks WAY TOO BIG! Seriously, growing up too fast! Where did my newborn go?
"Whut?!"
Smiley girl.
Ok, so that is the latest on B. Thanks again for your continued prayers for her and for us. I am so thankful especially for our therapist Cheryl who comes to our house. She is AMAZING and so helpful, and loves B. I am going to humbly ask for prayers for myself.... being at Clinic this week was a reminder that our baby is special needs. For now, she is so precious and so easy that I just forget. And it has kinda been hard on me emotionally go to back to that place where I remember things aren't perfect and "normal". It's all good though. We've gotten great reports, and we are thankful to a Great God!!!

17 comments:

Holly said...

Thanks for the update. I think about you guys often. I understand the emotional drain the hospital is on the mommy! It gets me every time. Hang in there and know you are in my prayers.

Ashley said...

Thanks for the updated. Thinking about you guys all the time. Love you and that precious girl

Alli said...

B is such a happy baby! Loved the detailed update...good job! How did you remember all of that? I had to write it all down. Glad you are recognizing your feelings and needs too. I will definitely pray for you too! Love you!

Mauri said...

So thankful for a good report on your little "overweight" girl... Are you kidding me? Who doesn't love baby rolls? I know you are so relieved for good news. Love you and praying for you!!!!

Amber said...

I'm so glad you guys are continuing to hear great things about B. Except for her weight problem though... :)

I just want to thank you for posting a picture of her watching baby enstein. K loves Seasame Street and you make me feel like an ok mom when you post pics of her watching that.

I sat mine in a box the other day to take pictures of her, I'm surprised that they are selling baby boxes.

Amber said...

that they "aren't" selling baby boxes.

MereMoore said...

What an ANGEL!! I am so thankful she is doing so well! I think we are going to make a box for my two - they don't sit up and I guess I better ditch the bumbos and bouncy seats!! Good to know!! Love you girl and sweet Brooklyn!!!

Alli said...

Thanks for all the info. I'm so glad that she got so many good reports. I'll be praying for her & especially for you. Love you!

Anonymous said...

What a blessing that you can often "forget" that she has special needs. God will give you added strength and wisdom when you have to deal more directly with those needs. I love you.
Your daddy

Tracy said...

I love that your dad signed his comment "your daddy" :) ...that brought tears to my eyes. We will always need our daddy! :)

LOVE the great report that B got at her appointment!!!!! YEA! I'm so glad that things are going so well for her! :)

And can I just say that she is such a cutie! And always soooo happy!!!! I need to hug on her!

Gay said...

Jodi, she is sooo cute. I just sat and smiled so big all the way thru your post. I just about can't stand it. I can't wait to get my hands on her and Reagan! Precious babies.
Love you!!

Unknown said...

i am glad to hear you got a good report...I know dr appts can be stressful because you just never know what you will hear. B is always in my prayers!!!

The Timberframer's Wife said...

You have two beautiful girls--I started to write babies, but Reagan has grown so much! So glad you got a good report!

Brooks Family said...

love your sweet girls; they are precious in every way! thinking and praying for you often!
mandy beard brooks

Marcia said...

Yeah for update!! Love all the awesome news!! So sweet!!

Unknown said...

This is wonderful. Thanks for the update. :)

Mary said...

She's so cute and smiley! I'm so happy for all of your good reports. God is so, so good! Love you!