Anya's Public Journal

Umm Dad??

noreply@blogger.com (Baby_Anya) — Wed, 14 Apr 2010 01:46:00 +0000

Share a song...

noreply@blogger.com (Anya) — Wed, 27 Jan 2010 15:35:00 +0000

I just wanted to share one of many songs that resonates in our hearts and floods our eyes... Heaven Is The Face by Steven Curtis Chapman. (lyrics posted below)

Anya's having a great morning, by-the-way. So smiley when I dropped her off at school.

Lyrics:
Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

Chorus:

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

Bridge:

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.

A new way to get giggles!!!!!!

noreply@blogger.com (Anya) — Wed, 27 Jan 2010 01:18:00 +0000

noreply@blogger.com (Baby_Anya) — Sat, 23 Jan 2010 23:13:00 +0000

more giggles.

noreply@blogger.com (Baby_Anya) — Mon, 21 Dec 2009 01:14:00 +0000

12/17 All is well. Just saying Hi!

noreply@blogger.com (Anya) — Thu, 17 Dec 2009 15:14:00 +0000

noreply@blogger.com (Baby_Anya) — Sun, 29 Nov 2009 14:51:00 +0000

11/9 Old Picture

noreply@blogger.com (Anya) — Mon, 09 Nov 2009 19:16:00 +0000

Just came across this picture on my phone. wanted to share. Anya is doing really well. Has slept great the past few nights.

10/31: We miss you, baby!

noreply@blogger.com (Baby_Anya) — Sat, 31 Oct 2009 00:11:00 +0000

We miss you so much baby, but it looks like you're having fun at Nana's. See you tomorrow...

10/30: Anya's Demo power-chair.

noreply@blogger.com (Baby_Anya) — Fri, 30 Oct 2009 14:05:00 +0000

We got Anya's demo power-chair the other day. She'll get to try this for a few weeks. If it looks like she'll understand it, insurance MIGHT get her one... I'll post a little video later.. (I know she needs a foot rest!!)

moew pics

noreply@blogger.com (Baby_Anya) — Mon, 26 Oct 2009 00:02:00 +0000

10/25 Babydoll had a nice fall day.

noreply@blogger.com (Baby_Anya) — Mon, 26 Oct 2009 00:01:00 +0000

10/21 She's such a happy girl...

noreply@blogger.com (Baby_Anya) — Wed, 21 Oct 2009 15:56:00 +0000

My little pumpkin!

noreply@blogger.com (Anya) — Wed, 21 Oct 2009 02:37:00 +0000

You have been sent 3 pictures.

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No news... I guess good news

noreply@blogger.com (Anya) — Sat, 12 Sep 2009 20:27:00 +0000

Haven't updated much in the last couple weeks, there's not much news to report. Anya is still really loving school and gets excited as soon as she enters the classroom and sees her teachers. She seems to be bored on days she doesn't get to go, we need to keep her more active, just so hard with the boys. This week in school she went to the park and was able to "play" in the sand, she liked the texture and moving her feet in the sand. So cute to see her sandy little piggies when I picked her up from school! She's been doing a lot of hand biting which is tiring. She hasn't been sleeping well either, lots of all nighters. Hopefully that will change soon, we all could use some good nights sleep.

We are pretty much moved in and feeling really happy with our choice to have moved to Appleton. We love it, just feels right. The parks are great, even equipped with special needs swings so baby girl can join her brothers in swinging! The neighborhood is great, and really like the neighbors. The teachers at her new school are awesome. Everything is going great!!! With the move we will continue to have her specialist in Madison, and just go back on an as needed basis. We haven't quit in our search for a diagnosis but we are ready to get back to a "normal" life, whatever that may mean for us.

I'll try to update more often as the school year progresses. We are very excited to see what Anya learns in school :)

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Kids on their first day of school

noreply@blogger.com (Anya) — Sat, 12 Sep 2009 15:47:00 +0000

You have been sent 9 pictures.

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First Day of school

noreply@blogger.com (Anya) — Wed, 02 Sep 2009 18:27:00 +0000

Anya had her first day of school today, she did fantastic!!! The teachers were wonderful with her and we felt very comfortable with their care :) She is going to love it. She participated in music class by shaking the bells! Thata girl! I post pics soon, we just got internet connection in the new house, now I need to find the cable to down load pics.

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NICU Opening Day!

noreply@blogger.com (Anya) — Fri, 14 Aug 2009 17:21:00 +0000

8/10/09 In Seattle

noreply@blogger.com (Anya) — Tue, 11 Aug 2009 00:30:00 +0000

Anya just flew to Seattle and boy are her arms tired... She flew very well. She's a good little traveller. We'll see how sleeping goes tonight (actually, she's passed-out on the bed right now). We are here see Dr. Klinghart for our third visit. It went really well but we'll see how his protocol works this time. The past couple times, Anya had been too sick vomiting to hold down anything we would give her. And not knowing what was causing the vomiting spells, we always hated to give her anything. But now she'll take it. We are hopeful.

All in all, Anya's been doing fairly well. She still has her retching spells everyday but they seem to be less frequent. They actually really only happen now when she is tired. Around 7am, when she had been up for a while just hanging out in her bed. Then again around noon/nap time. And once more just before bed. The glycopyrolate seems to help but too much definitely worsens things by making her saliva too thick.

On Thursday Aspirus is having their grand-opening/open-house of the new "Anya Marie Jackson Newborn Intensive Care Unit". It is going to be awesome. I'll write more on that later. details here...http://www.aspirus.org/healthInformation/index.cfm?catID=4&subCatID=39&pageID=148&det=690

7/20

noreply@blogger.com (Anya) — Mon, 20 Jul 2009 11:05:00 +0000

Mornin all! The princes is having a Bronchoscopy done this a.m. The procedure is scheduled for 7:30 so we need to be there by 6:15 for all the pre-op stuff. She needs to be put under again which we hate doing. We just woke her a few minutes ago. She looked up at the two of us hovering over her and just a gave a huge smile and stretch. She's so damn cute... I'll give an update when she out of the o.r.

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Anya had a good 4th of July!

noreply@blogger.com (Anya) — Sun, 05 Jul 2009 20:03:00 +0000

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Weight Gain.... Finally!

noreply@blogger.com (Anya) — Wed, 10 Jun 2009 23:05:00 +0000

Anya weighs 25 lbs. 11 oz. We actually need to back off in total calorie intake, she's getting pudgy. I love it!!!!!!

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6/2 ...

noreply@blogger.com (Anya) — Wed, 03 Jun 2009 01:21:00 +0000

Good Morning

noreply@blogger.com (Anya) — Mon, 01 Jun 2009 12:51:00 +0000

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5/27 Mayo summary

noreply@blogger.com (Anya) — Wed, 27 May 2009 17:57:00 +0000

Okay, the Mayo trip... Overall I would say the trip was worth it. Although we are still no closer to an underlying diagnosis, we did get some answers.

We got affirmation that the genetic and other testing she's had done was thorough and appropriate. They did have a couple more possibilities but said that she really does not fit into any one known disease. They admittedly said that although they know a lot, they don't know everything. They suggest that we just check-in perhaps once a year, as new testing is constantly under development.

We did discover via broncoscopy, that Anya has 'silent aspiration'. In other words, she will occasionally aspirate with out an appropriate response like coughing. It's not a good thing to have but it is definitely good to know about. We were surprised at this as we always felt she's had such a good strong, productive cough and she's rarely had pneumonia. I read somewhere that the lungs can handle aspirating about 10% of your oral secretions (saliva) but with persistent aspiration overtime the lungs will get damaged and weaker. Knowing that, it is unlikely that we'll be attempting any oral feeding anytime soon. Saliva is relatively sterile compared to the risk of a bacterial pneumonia you can get from aspirating food. So now we've started Anya on Glycopyrolate which is supposed to greatly reduce secretions. Unfortunately the drug does not differentiate between oral secretions and other natural body secretions. Which means is also causes urinary retention, constipation and reduces the ability to sweat. We have started on the lowest dose and have slowly began increasing until we notice a change. If the dose isn't high enough, she'll still have a lot of secretions. If its too high her secretions could just become thicker and even harder to swallow. If the drugs don't work or actually even if they do, there are other options we have. Botox the salvatory glands every 4 months under anesthetic (no thanks) or surgically remove and/or tie-off glands in her mouth. Both are actually quite common we're told. Anya has a swallow study scheduled for June 3rd and following that we may start trying VitalStim therapy which theoretically strengths the throat muscles for a more capable swallow. We looked into the therapy over two years ago but it was still rather new and untested on pediatrics. It sounds like it is mostly used on stroke victims and adult dysphasia. The downside to VitalStim is that is time consuming, expensive and insurance doesn't cover it... But we've seen a lot of forum comments of kids who've had some success with it.

One of the Doc's at Mayo also helped us realize that the issues we are seeing now (retching, coughing, lethargy) is not the same issue we had been dealing with the past few years. (By the way, Anya is sick now. She's been sick nearly every damn day since Easter). The vomit issues we most likely simply the result of the Hiatal Hernia (that was noted by the radiologist when she was 5 months old and we weren't told about.. yea I'm still a bit pissed about that). Her symptoms we witnessing today are more common following a Nissen. Retching is common and supposedly "typically" gets better with time. Anya's severe hypotonia complicates things a bit more. Nissens are meant to hold stomach content down. They inherently make swallowing a bit more difficult. So while Anya had her old torn (broken) nissen perhaps she could swallow easier then and was at less risk of aspirating on built up secretions. So essential we solved one problem but created a new one.... Two steps forward, one back. At least she's getting calories. Oh yea!!! She is about 23lbs now!!!! That is nearly a 5 lbs gain since surgery.

Our next step is to get Anya in for a repeat MRI to see if her Cerebellum continue to atrophy, hopefully a spinal tap to repeat Neurotransmitter testing and perhaps get her teeth cleaned all under the same anesthetic.