Sunday, December 20
Thursday, December 17
Sunday, November 29
Monday, November 9
11/9 Old Picture
Just came across this picture on my phone. wanted to share. Anya is doing really well. Has slept great the past few nights.
Friday, October 30
10/31: We miss you, baby!
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.
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!!)
Sunday, October 25
Wednesday, October 21
Tuesday, October 20
My little pumpkin!
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Saturday, September 12
No news... I guess good news
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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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
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Wednesday, September 2
First Day of school
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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Friday, August 14
Monday, August 10
8/10/09 In Seattle
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
Monday, July 20
7/20
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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Sunday, July 5
Anya had a good 4th of July!
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Wednesday, June 10
Weight Gain.... Finally!
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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Tuesday, June 2
Monday, June 1
Wednesday, May 27
5/27 Mayo summary
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.
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.
Saturday, May 23
Wednesday, May 20
5/20 Busy week
Hi all. Everything is going fine. No medical miracles as of yet but it's only Wednesday... Here the weeks schedule:\
Yesterday: 8:30 2-hours w/ new Primary Pediatrician
12:30 Neurologist
Today: 8:00 Trachea X-rays
8:15 Chest X-rays
9:45 Pulminology
12:45 Allergist/Immunology
2:15 Geneticist, family history
2:45 Geneticist/Neurologist
4:00 Blood draws
Thursday: 7:45 Endocrinology
9:00 GI
1:30 Otorhinolaryngology (aka ENT, ear nose & throat, I think)
Friday: 8:45 Primary Pediatrician again to go over all the findings and to get the prescription for that magic little pill that will fix everything.
Lots of appointments in a week but it's definitely a great way to go. It like cramming a year's (or so) worth of test into a few days. We are obviously hopefull but so far it reallly is not much more than what we've already done. Just a repeat and going faster. But it's a bunch of new eyes on her, so who knows...
Anya slept great last night; 11-hours straight!!!! Katie and I actually got an insane 9-hours of sleep!!! Wow does that feel good. I can actually think a complete thought today..
Tuesday, May 19
5/19 Mayo Clinic this week
Anya is going to be seen at Mayo Clinic this week. We got here last night and meet her new doc at 8:45 this a.m. (Tuesday morning). At that point we'll get a tentative schedule for the remainder of the week. Should be interesting... maybe. Anya was apparently so excited for this appointment that she couldn't even sleep. She slept from about 2:30 - 3:00. crazy kid.
Friday, May 15
Exciting News!!!!!!!!!!
Anya has exciting news to share. Follow the link for more details!
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Thursday, May 7
5/7 Eye exam
The good news is that her cataracts haven't grown; still tiny and not
affecting her vision (is it affecting or effecting?). Her vision
hasn't gotten any better though. It is still around 20/80.
Structurally her eyes are perfect but apparently this is somewhat
normal with global developmental delay.
Wednesday, May 6
Tuesday, May 5
Finally - A Happy Day!!!!!!!!!!!!!!!!
Anya's Happy Hugs!
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Sunday, April 26
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
No pneumonia. Clear chest xray and labs came back pretty much normal with the exception of slightly elevated BUN. Increase BUN can be a sign of dehydrated. Ironically however Anya's BUN, even when she is known to be dehydrated from all her vomiting, is typically measures low when we've come to the ER in the past. Today she doesn't physically appear to be too dehydrated, she has lost minimal amount of fluids because she can not vomit, she's been getting fluids/food all day and she's had a few wet diapers. I think Anya needs to study harder for these tests, she's doing something wrong. This kid's so goofy.
Her heart rate is still high (160's - 190's), which I don't like...
Her heart rate is still high (160's - 190's), which I don't like...
3/24 Back in the ER...
Anya and I are hangin in the ER tonight. I decided to bring her in to check for pneumonia. She was showing some mild signs of breathing troubles and had a heart rate ranging from 145 - 165 (I think norm for a 3 year old is about 90-110bpm), although no fever. Chest x-ray just came back normal. So either no pneumonia or it is too early to tell. Drawing blood right now for labs....
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..
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