Saturday, April 25
4/25 Aksel B-day party..
morning last night. Baby doll was very aggitated and uncomfortable. I
took her into the walk in clinic to get her ears looked at (they never
looked in the ER yesterday) and it turns out she has a pretty bad
inner-ear infection. She on Amoxicilan (sp) now so ought to be better
soon. Aksel had his 4th birthday party today and the kids had a
blast. Anya got to go down the slide...
Friday, April 24
Coming home
Her heart rate is still high (160's - 190's), which I don't like...
3/24 Back in the ER...
Thursday, April 23
4/23
Unfortunately things haven't been going so well for Anya these past few weeks. She's probably only had 4 or 5 good days in the past 3 weeks. Following her surgery the vomiting episodes seemed to be reduced to lasting only an hour or two where she would just bring up mucus, be lethargic for a bit but then quickly snap out of it. Lately however she's been sick most of the days, most of the day and night. Her sleep has reverted back to terrible, up by around 1a.m. each morning and staying wide awake until around 7am. Although at these times she not sick, in fact just the opposite, she is happy and just wants attention. When she does "sleep" through the night it is actually more that she just happens to be lethargic and retching up mucus during the night. Last year at this time was also a really bad period for her. We suspect her 'normal' issues may just be exasperated now by seasonal allergies. We are seeing an allergist May 26th. Last time we tried to see an allergist they blamed her vomiting thick mucus on the likely Mitochondrial disease. Now that Mito is off the table we'll see what they can come up with.
One interesting thing (to us at least) is that she is no longer biting her hands. I think she may have done it once since surgery but that seemed to be more by accident. Heck we all accidentally bite our hand once in a while, right? So no more hand biting, but we're back to no sleeping and lots of mucus. I probably goes without saying but we are both getting very tired and frustrated by this. Watching your child suffer day after day after wasted day... I know things could be a whole lot worse and our hearts are constantly out to those parents whose kids are seizing non-stop and/or suffering chronic pain. It is difficult to see so much hope in Anya's eyes but to not have yet broken through.
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Tuesday, April 7
Anya does NOT have Mito!!!!!!
biopsy results and Anya does NOT have a Mitochondrial disease!!!!!!
In fact, Anya's mitochondria are "Rock Solid". There are zero signs of
any dysfunction or anomaly of any sort. So then what the hell is
wrong w/ our little pumpkin??? Who knows.. and for tonight, who
cares... All we know is that we are so relieved in confirming our
beliefs that Anya does not have this life threatening, degenerative
disease. Tomorrow we will continue to try to figure her out. Tonight
we will count our blessings.
4/7 Tuesdays with Anne...
therapist, Anne. Every Tuesday, when she's not sick, Anya gets an
hour of in-home physical therapy. Anne just goes over techniques we
need to work on for Anya's development. Lately her hamstrings have
gotten very tight. It's most likely due to a recent growth spurt as
bone grows faster than muscle. We try to do a couple sessions each
day of stretching and we also have her sleeping with braces on her
legs to hold them straight and stretch overnight.
Well, today is the Big Day.. We meet with the Genetisist to get her
Muscle Biopsy results. This could offer a diagnosis. Obviously we'll
post when we find out..
Monday, March 30
3/30 Great day!!
Here is Anya listening to Nana G on the phone...
Sunday, March 29
Hmmmm
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Friday, March 13
Monday, March 9
Thursday, March 5
3/5 2 steps forward, 1 step back...
Don't get me wrong. We'll never give up on this little punkin. We knew going into the surgery that this may not be our answer. We tried not to get our hopes up, but it happened anyway. Just like it always does. Just like it probably always will when we come across another possible resolution. Today was just huge disappointment. We were already begining to dream of what we'll do with those 'extra days' we'll now have each week that we used to spend sitting at her side. Thinking how we can't wait to start gaining muscle mass and begin some aggressive physical therapy.
She is still sleeping/lethargic now and seems to have stopped vomiting and retching. The retching finally stopped around 6 but by that point she was bringing up trace amounts of blood. Not enough to be threatening but enough to know she is putting substantial strain on her new nissen wrap. This was our concern here, is that if she continued to vomit follow the nissen re-do, that she will just tear through this one as well and it will be back to square one. For now the nissen is doing it's job; when she is vomiting, she is only bringing up mucous and saliva from her esophagus. Her stomach content has all stayed down. Although we'll continue the need to manually empty her stomach content and stop feeding her at the on set of an episode (to reduce upward pressure on the nissen), at least she is not bringing up damaging stomach acid through her esophagus. I also feel more comfortable now doing a slow drip feed sooner since it doesn't seem to be coming up and contributing to the retching. If that's the case (time will tell), she'll be able to continue caloric intake and the potential to gain some weight.
Well SH##!!!!!
We are out of options.
3/5 Doing GREAT!!!!
We often get asked if this means she'll be able to eat by mouth now, but unfortunately it's not that simple. Her dysphagia (inability or difficulty coordinating a swallow reflex) is more likely a neurological dysfunction and not totally a structural or physiological issue. Although at least now she has a fighting chance... Prior to repairing the hernia there was probably too much discomfort or blockage of the esophagus to swallow, even if she knew how to. Time will tell. Our goal is for her be eating cake at her 4th birthday party.
Tuesday, March 3
Monday, March 2
3/2 One step closer..
Anya is now taking bolus feeds and she just put her epidural catheter taken out. I'm thinking it if somebody pulled a 9-inch long tube out of my spine, I wouldn't be smiling. Anya sometime has a sick sense of humor.. She was smiling and giving herself her "Happy Hugs" the whole time, even while they pulled the tape off. Hey, whatever makes her happy.
Sunday, March 1
3/1 Another good day
Saturday, February 28
2/28 Happy girl
Anya's doing great today. We're getting smiles!!! She is finally starting to take pedialyte (very slowly).
Friday, February 27
2/27 Slept well considering...
Right now she appears to be sleeping soundly (O2 pinned at 100%, yea!) and she hasn't had any retching in several hours. She's doing great.
Thursday, February 26
2/26 All done and doing fine...
2hours...and counting..
We just got an update that everything is going as planned. It was an emotional drive in this morning. Seeing those big baby-blues in my rear view mirror made it literally painful to aim the car toward the hospital. It was an awkward internal battle where instincts were tell me turn the car around and drive the other way. It was not a "gut feeling" that something was going to go wrong. It was an instinctual feeling that you must protect your child from danger. From being cut in to. From rolling the dice and gambling on statistics. As much as I know she needs this, and I know she will be fine and strong and brave and that this is the best thing for her, there is still that risk involved. And I do not like gambling those blue eyes. For as long as possible I had (dad writing) put off the imagery of Anya on the OR table; as it was just too much. I have no problem with the "gore" of it all, but when it is my cute, adorable, Innocent, loving, happy, little princess, that's a totally different story... It didn't really hit me until I was simply trying to pick out her cloths this morning... when you think about what to wear, what's going on today.. what does she need to be prepared for... For Anya on any other day the decision is based on whether or not she is looking sick, if she has PT that day, if we are going anywhere, if it's cold out. This morning's decision inadvertently brought on all those other IF's or rather the "What if's". So I took my little 30 second breakdown, shook it off and grabbed something comfortable for her to wear. I stopped thinking about it (pretty much) and decided to lay back and trust God on this one.
Wednesday, February 25
2/25 Night before surgery
So she is sleeping now and is only allowed to eat until 3:00am so she has an empty stomach for surgery. I'm sure she'll be as strong as she always is but I still hate having her go through this. Breaks my heart (but fixes her belly, hopefully). Asking for a few extra prayers on this one... Thank you all!!! We'll update post-op.
Tuesday, February 24
2/24 Last episode??
Thursday, February 19
2/19 update
Prior to meeting with the surgeon the decision to redo Anya's nissen felts a bit like the decision to sign the "Stimulus Package", we don't feel comfortable doing it, it may not help at all, it may actually hurt the situation but thing have gotten so bad that we have no real choice but to just do something. However, after our meeting we both feel very comfortable that this is the right decision. We reviewed her upper GI results and could clearly see that over 25% OF her stomach had migrated up above the diaphragm. It is a severe paraesophogeal hiatal hernia. It is difficult to say if this is the cause of the vomiting or rather the result of the vomiting. In either case it's not good and must be corrected. Hiatal hernias are common following a nissen, especially one done at such an early age (5-days old). Anya has had upper GI's in the past but we were always told everything was normal. Out of couriosity I reviewed her Upper GI report that she had done after the first month of this vomiting starting when she was 5 months old. It reads:
"...Barium extends into the rap portion of the fundus which appears to extend above the diaphragmatic hiatus..." Now I'm sure I've read through this report before because I've read over all her records time and time again looking for answers. The difference this time is that I now better know my (her) anatomy, and know now that what that says is that she's had this Hiatal Herina for TWO years.. (I'm just going to bite my tongue here......)
Here's my theory... I thing that along with her Paraesophogeal Herina she could also have a "Sliding hiatal hernia" which is just what it sounds like, a hernia that periodically slides up and down. Perhaps the hernia noted in her earlier Upper GI was not large enough to be concerning because it may not have been done while she was vomiting or rather while it was at it's maximum herniation. I have to review out journal but I don't think we had started journaling yet.Perhaps the stomach gets forced up through the diaphragm as she gains a little weight or start taking in the recommended calories, causing it to be cyclic. As she stops eating and looses water and mass, the stomach drops back into place in the abdomen. Just a theory. Anyway it needs to be fixed, and unlike the Stimulus package, I now think this could actually be a viable solution!
So now what... Anya goes back in for surgery on Thursday, Feb 27 which fortunately gives me a good excuse to get out of my vasectomy (phew, that was close). Unfortunately because our surgeon is a dinosaur (his words, not mine) this surgery will not be done laproscopically like the first time. The plus side is that this guy has a much lower failure rate (1%) versus the national average of 15% (failures are when the nissen comes undone and a hernia occurs like in Anya's case. With his technique he adds many more internal stitching for reinforcement. Whatever works... We are very comfortable with this surgeon and needed to just bury of concerns of the huge 6" scar across her belly. I remember on her first surgery when I was concerned with those little laproscopic scars. In hindsight, no big deal. I'm sure it'll be the same for this one. We are just so excited to have possibly found the answer to her vomiting so she can grow and have an opportunity to thrive. She's so dang cute sitting here next to me. I'll try to get some new pictures out soon..
Monday, February 16
Sunday, February 15
2/15 doing well
Friday, February 13
2/13 Sick again
Tuesday, February 10
2/10 Home and sleeping
2/10 Good shape for the shape she's in...
Monday, February 9
update
All done!
2/9 at pre-op
Saturday, February 7
A little prayer- Anya
Just wanted to let you all know that Anya will be having a muscle and skin biopsy, and endoscopy on Monday Feb. 9 at 9:50. I am asking that you say a prayer for Anya. Pray that she handles anesthesia well, that the biopsy tells us important information and that Anya has a quick and painless recovery. We appreciate all the prayers and thoughts and know that it helps. You have all been so supportive on this journey that Anya has taken us on. We will update post-op.
Thank You
Katie and Pete
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Tuesday, February 3
Another sick day
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Sunday, February 1
Saturday, January 31
New Pictures
Wednesday, January 28
1/28 Update..
Now regarding the princes.. She is doing great (sitting in my lap right now). I'm not sure if I mentioned it before but we decided to go ahead with the muscle biopsy. We will be doing it here in Madison on Feb 9th as well as a skin biopsy and endoscopy. We met with the surgeon yesterday to go over the details. Result should follow about two months after the surgery.
Today we drove to Milwaukee to see Dr. Li, the 'greatest Cyclic Vomiting Syndrome specialist in the world' (paraphrasing his actual title). We had a nice long discussion about the next few things we can try to get this little girl to break this cycle. We'll see how it goes..
Wednesday, January 21
Saturday, January 17
1/17 Here we go again...
Wednesday, January 14
1/14 Update
Her EEG went well. We haven't gotten the official report yet but preliminary report shows zero seizure activity, random spikes and no apparent slowing in the waveforms. Another improvement as far as we are concerned. The option to put Anya on anti-seizure meds was given but we feel confident in her stability.
Monday, January 12
1/12 24hr EEG
Sunday, January 11
1/11 Doing well
Friday, January 9
And again..
Wednesday, January 7
1/7 Extra sleep..
A side note: Katie came across a protocol for some Cyclic Vomiting kids where they take a Mt. Dew or Red Bull the moment they feel an episode starting and it seems to give them just enough energy to abort the issue... hmmm
Tuesday, January 6
1/6 Sick again
Sunday, January 4
1/4 All better
I spoke too soon last night when I said she was sleeping. She ended up waking a few moments later and I'm not sure if she slept at all last night. Ended up just putting in a video for her to watch at around 2am. She was up still at 3 and 4. Sleeping at 5 but up again at 6. I'm sure she will crash good when we get her in her crib at home. She actually just fell asleep a few minutes ago on my pullout sofa-bed. She looks very good now and peacefully sleeping.

Saturday, January 3
1/3 She sleeps..
1/3 In hospital tonight...
Friday, January 2
1/2 Not looking so good :(

Anya is still deep in her vomiting episode. She has been extremely lethargic all day long and just looks terrible tonight. She is still hand biting occasionally but it appears as though her bite is so weak that it doesn't even hurt her. We haven't felt yet that she'll be able to hold down any fluids yet so we haven't given any but pretty soon I just do it anyway and let her puke it up. Hopefully at least a little will stay down and get absorbed. I actually just gave her 10cc's of a new food supplement we've been adding to her formula in to her J-tube. It is a highly concentrated calorie supplement made by Nestle's medical food dept. I'm pretty sure it is actually just an overpriced blenderized Wopper from Burger King. Obviously fluids are the most important factor here but we've already tried rehydration (on several occations) to snap her out of these episodes to no prevail. Perhaps a shot of high cal formula will give her the energy she needs to pull through. (don't tell anyone :) but I even tried giving her a little Red Bull energy drink onetime last year. No apparent affect, perhaps she needed an espresso chaser next time)
1/2 Anya's still sick.. but here is something to cheer us up anyway...
Thursday, January 1
1/1/2009 Pukey day :(
Wednesday, December 31
Tuesday, December 30
12/30 update
Her ability to reach for and accurately grab toys continues to improve. She has been caught a few times recently swapping an object from one hand to another. This morning in the hyperbaric chamber I noticed her look at a toy on a retractable draw-string hanging up near her left shoulder, reach for it with her left hand and at the same time as she grabbed it she brought her right hand in toward midline and immediately brought that toy to her right hand, perfectly.
Sunday, December 28
12/28 Anya doing great..
Monday, December 22
12/22 Doing okay...
We did decide today to go ahead with the muscle biopsy but to just have it done here in Madison rather than going to see Dr. Schoffner in Atlanta. It is a bit of a gamble though because in Atlanta they can perform a fresh muscle biopsy and be able rule out (or in) a broader spectrum of mito conditions then a frozen biopsy performed here. Logistically (and for insurance reasons) we are just finding the Atlanta option to be too prohibitive. Madison is a great facility and we have confidence in them here. In the rare but quite possible event they don't fine anything here, we can always reconsider Atlanta in the future... There have also apparently been some recent improvements made to a mito DNA blood test that we had done in the past, that justified retesting. So that will be the first step. We are going to try to see the Geneticist sometime in January to schedule the biopsy.
12/22 Sick again.
Sunday, December 21
12/21 All is well.
Saturday, December 20
12/20 surprise..
8:20 get the boys to sleep. 8:40 get Aksel back to sleep. 9:00 repeat 9:20 repeat. 10:30 get Anya to sleep in her bed. 10:35 get Katie to sleep in her bed. 10:37 get self to sleep in Anya's spare bed. 10:38 Smile, kick bare feet around on cold sheets and enjoy the anticipation of finally getting to go to sleep after two very long nights. 10:40 "Woof, Woof" Rylie has to go outside to go potty....
She's Home!
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12/20 At the ER
12/20 Still sick :(
This is a long episode and is taking it's toll on all of us. Anya's hand biting has been so bad. She has open wounds on both hands despite our efforts in keeping her hands away from her mouth. We keep socks on her hands to help keep those sharp teeth off her shin but she is still able to either bite right though the socks and/or pull the sock off and bite again. I finally ended up making her a little pair of handcuffs out of pipe cleaners and plastic chain links. In her red jumpsuit and restrains, Anya looks like a little convict.
12/20 Almost done..
Friday, December 19
12/19 Little pip-squeak still sick
On a diffent note, Anya new switches (http://www.ablenetinc.com/Home/Products/Switches/tabid/57/Default.aspx) arrived in the mail just now. We've played with a few diffent styles of switches w/ her therapists lately and found a couple that she can activate fairly well. She'll be able to use these switches to turn on toys and potentially begin a form of communication. New toys, Yea!
Hopefully the princess will actually sleep tonight....
12/19 Our little angel is sick again
Tuesday, December 16
Tuesday, December 9
12/9 Snow day
Anya is sick again, this is only 6 days after her last episode. So discouraging, she had gone 30 days twice in between episodes and put on some weight. Needless to say her weight has dropped! Hopefully this will be over soon, until then back to suctioning!
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Thursday, December 4
Wednesday, December 3
12/3 That's enough...
Good night Sunshine!!! Feel better! See you tomorrow night..
Dad
Monday, December 1
12/01 Anya's at Nana G's
Saturday, November 29
11/29 Website back online... and baby-doll sick today :(
Anya woke up sick this morning around 3 am... same old story.. never saw it coming. Unfortunately it came during the weekend when the two oldest boys are at Grandma and Grandpa's and we were going to try to get some x-mas shopping done. Oh well, the piece and quiet (funny how we now consider only two kids crying as being quiet) is very nice. Anya appears to be snapping out of it and may be ready to start eating again soon. She goes through a very (VERY!!) annoying stage of teeth grinding as she gets her energy back.
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Sunday, November 9
11/9 Thanks for the visit
Friday, October 31
Wednesday, October 29
10/29 Anya's baby brother
Friday, October 24
Wednesday, October 22
10/22 Back in the Hospital
Monday, October 13
8/13 All is well again
Sunday, October 12
10/12 Sick Again
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Saturday, October 11
Saturday, October 4
New record!! but sick again.
Wednesday, October 1
October 1 Great News
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