I know it's been a while since the last post but there hasn't been much to post. After writing that Anya was really doing well of course she started to get sick. The last 3 weeks have been awful! She has been sick more than healthy and it's really taking a toll on our emotions. I can't imagine what her little body must feel when she starts vomiting. My little princess just looks at me with these big blue eyes as if saying "mommy do something, take this vomiting away". I feel so bad when there isn't anything I can do for her, it is such a helpless feeling. I have never been so sad, mad, hopeless, frustrated, angry........ To see your child so sick is that absolute worst.
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Monday, August 25
Friday, August 1
8/1 Stander.
Anya finally got her stander last week. She started out going in it about 4 times/day 10 minutes each. She's been tolerating it very well so we're slowly increasing time. We are firm believers in following a natural developemental sequence of stages, i.e. creep, crawl, stand, walk, run, fly (we aim high). This stander is not really intended to teach her how to stand but rather to get her hip sockets to grow appropriately. When the bones don't experience that normal upward stress, the socket doesn't know to grow around/over the ball. Hopefully this will prevent future hip dislocations and potential surgeries. Plus it's pink. The boys love pushing her around the house (away from the stairs).
Thursday, July 31
7/31/08 Lots of new stuff...
And in this corner, weighting in at 18 POUNDS!!!!!! Anya Jackson!!! (in the pink shorts of course). That's right, Anya now weighs 18lbs. She is definitely heading in the right direction again..
She has been doing really well lately. Katie and I recently returned from a two week trip to Arizona where we took Anya for some "intensive" therapy. Not so much intensive with respect to effort on Anya's part but more intensive in time and sensory input. We took her to a place called Futures Unlimited (www.futuresaz.com) where they practice CCDT (Chronologically Controlled Developmental Therapy). We've said time and time again that we'll try anything within reason (and as some of you know, not-so much within reason). We were referred to Futures from Dr. Klinghart in Seattle, and after learning more about it and speaking with James and Susan Snapp, siblings who's father Ed Snapp developed the CCDT protocol, we just felt it was a fit for Anya and worth a try.
We are very happy with the results we've seen. The biggest breakthrough for us is that Anya now tolerates being placed in prone position (on her belly). She used to just HATE this. We'd been trying to get her to do this for two years. She would cry, twist, squirm and ferociously bite her hands (it's an Anya thing) the minute you placed her in that position. Today, she will hang out in that position for 30 minutes (perhaps more if we tried) with out fuss. No only is she not fussing but she is bringing her head up, looking around, smiling. I wouldn't say she loves it but it is night and day from where she was at.
She also no longer bites her hands like she used to. She's been known to draw blood (her own or any one brave or stupid enough to get their fingers near that mouth). One improvement that we'd seen recently, even before the therapy, is that she would appropriately respond to us telling her to get her hands out of her mouth. It took her a moment but she would pull it away. Although sometimes, if we weren't watching or if she was acting like her brothers and not listening to us, she would get a hold of a hand an just chomp. She would just let out a huge scream and cry with a confused and frustrated look on her face with tears streaming down her cheeks. After the therapy we've noticed she doesn't bring her hands to her mouth nearly as much (perhaps 10% of what she used to do). And now when she does, she just mouths it a little. She hasn't bitten since we've returned.
We actually planned on going to Arizona several months ago but canceled because she was sick and puking so much. We finally just decided that if we don't do it just because she is puking, we may never get to do it. Prior to the therapy she was getting sick nearly every 3-4 days. She was pretty sick the first day of therapy but then each of the days following that she would maybe vomit once or twice throughout the day but never fell into her typical episode where she was completely lethargic. Since we've returned I think she's only had two very mild episodes that where over within a few hours compared to a few days.
So much more to add to this... we've been doing a lot with her and just haven't had much time to write about it. We had a couple great appointments today actually that could offer us much more potential. Just know, Anya is doing better than ever. She has a long, long, long way to go but SHE WILL GET IT!! We really feel we are finally on the right track...
She has been doing really well lately. Katie and I recently returned from a two week trip to Arizona where we took Anya for some "intensive" therapy. Not so much intensive with respect to effort on Anya's part but more intensive in time and sensory input. We took her to a place called Futures Unlimited (www.futuresaz.com) where they practice CCDT (Chronologically Controlled Developmental Therapy). We've said time and time again that we'll try anything within reason (and as some of you know, not-so much within reason). We were referred to Futures from Dr. Klinghart in Seattle, and after learning more about it and speaking with James and Susan Snapp, siblings who's father Ed Snapp developed the CCDT protocol, we just felt it was a fit for Anya and worth a try.
We are very happy with the results we've seen. The biggest breakthrough for us is that Anya now tolerates being placed in prone position (on her belly). She used to just HATE this. We'd been trying to get her to do this for two years. She would cry, twist, squirm and ferociously bite her hands (it's an Anya thing) the minute you placed her in that position. Today, she will hang out in that position for 30 minutes (perhaps more if we tried) with out fuss. No only is she not fussing but she is bringing her head up, looking around, smiling. I wouldn't say she loves it but it is night and day from where she was at.
She also no longer bites her hands like she used to. She's been known to draw blood (her own or any one brave or stupid enough to get their fingers near that mouth). One improvement that we'd seen recently, even before the therapy, is that she would appropriately respond to us telling her to get her hands out of her mouth. It took her a moment but she would pull it away. Although sometimes, if we weren't watching or if she was acting like her brothers and not listening to us, she would get a hold of a hand an just chomp. She would just let out a huge scream and cry with a confused and frustrated look on her face with tears streaming down her cheeks. After the therapy we've noticed she doesn't bring her hands to her mouth nearly as much (perhaps 10% of what she used to do). And now when she does, she just mouths it a little. She hasn't bitten since we've returned.
We actually planned on going to Arizona several months ago but canceled because she was sick and puking so much. We finally just decided that if we don't do it just because she is puking, we may never get to do it. Prior to the therapy she was getting sick nearly every 3-4 days. She was pretty sick the first day of therapy but then each of the days following that she would maybe vomit once or twice throughout the day but never fell into her typical episode where she was completely lethargic. Since we've returned I think she's only had two very mild episodes that where over within a few hours compared to a few days.
So much more to add to this... we've been doing a lot with her and just haven't had much time to write about it. We had a couple great appointments today actually that could offer us much more potential. Just know, Anya is doing better than ever. She has a long, long, long way to go but SHE WILL GET IT!! We really feel we are finally on the right track...
Saturday, July 12
July 12 All is good.....
I know it has been a really long time since I have last updated so I wanted to quick add an entry. Everything is going really well. Anya, Pete and I just got back from Arizona where we did a 2 week intensive therapy treatment that was very interesting. I will update later about the treatment but it went really well. We missed the boys like crazy but was nice to spend 2 weeks with just Anya, giving her our full attention:) She continues to vomit every couple days but at least we are able to get most of her feeds in.
We will update later about her treatment and new pictures but I wanted to let you all know she is doing fine!
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Sunday, June 22
June 22 Not a lot going on.....
Anya is doing fairly well these days, she continues to vomit every
couple days ( about 4 days in between) but the episodes are not as
severe as they had been. She actaully hasn't missed a full days
nutrition in a couple weeks. That has helped a lot with keeping her
weight at a steady 17.9 lbs. I think if the episodes continue like
this we may see some more weight gain, I'm optomisitic! Last week
saturaday her J-tube (goes into the small intestine) got out of place
and was pointed straight up her esophogus. So for the whole night her
tube was going straight up her throat, needless to say, she was
vomiting the whole time. We figured it out and took her to the ER and
it was put back in the correct location, she immediatly stopped
vomiting! Always something........ It's a miracle she didn't aspirate
and get pneumonia.
couple days ( about 4 days in between) but the episodes are not as
severe as they had been. She actaully hasn't missed a full days
nutrition in a couple weeks. That has helped a lot with keeping her
weight at a steady 17.9 lbs. I think if the episodes continue like
this we may see some more weight gain, I'm optomisitic! Last week
saturaday her J-tube (goes into the small intestine) got out of place
and was pointed straight up her esophogus. So for the whole night her
tube was going straight up her throat, needless to say, she was
vomiting the whole time. We figured it out and took her to the ER and
it was put back in the correct location, she immediatly stopped
vomiting! Always something........ It's a miracle she didn't aspirate
and get pneumonia.
Anya is sick today but doing quite well. I think we may start food
later this evening. Anders is now camped out in the bathroom for the
night, he just woke up out of a sleep, vomiting all over. Ugh....... I
have seen enough vomit to last me a life time :) So, off to clean!
Sunday, June 8
6/6 First bike ride
Anya was LOVING this!!!! It took a lot of trunk support but her head control was great and she grabbed and held the handlebars right away.
6/8 Sick again
Little pumpkin is sick again. Started around 8:30 last night w/ zero warning.
For our own records, also sick on..
Thursday, May 22nd starting 9pm lasting until Sunday, May 25th
Thursday, May 29th starting around 11am lasting until Sunday, June 1st
June 2nd, Quit EleCare and started Similac Organic
May 30 began 7.5ml (5mg) Periactin /day (tripling previous dosage)
Friday, June 6
See Birthday Party Pictures here...
Click this link: http://picasaweb.google.com/katie.jacksonfamily/AnyaS2ndBirthday
p.s. Anya weighed in at 17lbs 2.8oz... Go chubalub!
p.s. Anya weighed in at 17lbs 2.8oz... Go chubalub!
Friday, May 23
Thursday, May 22
Happy Birthday to Anya!
Happy 2nd Birthday baby girl! What a 2 years you have had. Mom and dad are so extremely proud of you and feel so grateful to have you as a daughter. You are a blessing! Anya has been healthy this week and more importantly is healthy today!!! Praise the Lord! Thank you for all your prayers and thoughts these last two years. Pete and I are very thankful for the amazing support we have received over these last 2 years. THANK YOU!!!!!!!
Last week we found out Anya needed to have an echocardiogram done because an EKG came back with abnormal results. Needless to say we were very concerned. Well, yesterday we found out her heart is healthy and her EKG and Echocardiogram looked normal. Good job baby girl, that's a good test to pass:) We also found out that Anya is almost 17 lbs. That is great success. She has gained 1 pound in a week. (She hasn't gained a pound in 18 months so we are very happy).
All I can say today as we are celebrate her life is, Hallelujah!!!!!!!!!!!!!!!!!!
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Tuesday, May 20
5/20 Update
Anya has had a great couple days recently. Happy, smiling and
giggling. We started her on Zyrtec (per Dr. Mom's request) and it
really seems to have helped with her allergy symptoms. We're tried
other antihistamines in the past with out success but this one seems
to be helping.
giggling. We started her on Zyrtec (per Dr. Mom's request) and it
really seems to have helped with her allergy symptoms. We're tried
other antihistamines in the past with out success but this one seems
to be helping.
As some of you know, we had some nerve racking news last week where
are new pediatrician thought she noticed cataract developing in both
of Anya's eyes. The good news is we have a very observant and
thorough pediatrician. The bad new is she was right. We went to a
pediatric ophthamologist today that confirmed it.
Here again there is good and bad news. The good news is that he does
not believe it is currently affecting her vision although we will find
out for sure next Tuesday when they do a PEV exam
(http://en.wikipedia.org/wiki/Visual_evoked_potential ). The bad
news it that the cataract is located in the worst possible spot,
center posterior. Being located here disrupts the vision the most.
If they get any larger or if we find out on Tuesday her vision is
impaired, she will likely require surgery.
Monday, May 12
Sick Again
Baby girl is sick again. This is crazy, she was sick last wednesday and Thursday, so she has had only 3 days in between this spell. I am ready to loose my mind. I can't imagine what is causing this but we need to find out soon, she is so skinny. I can't even imagine what the inside of her esophagus must look like. Please keep Anya in your prayers, we need a solution for this vomiting.
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Thursday, May 8
5/8 All is well
Anya is doing great again. She snapped out of it around 12:00 noon.
Full energy and ready to eat. Hopefully she'll sleep tonight.
Full energy and ready to eat. Hopefully she'll sleep tonight.
5/8 spoke to soon
Long night of vomiting every 5-20 minutes... far from over this episode this morning.
Wednesday, May 7
5/7: Another sick day;
Thursday, May 1
5/1 Sick day..
Anya decided to change it up a bit and get sick a day early this week. Same old story...
The boys had a great time today to see Great Grandma and Grandpa and Great Aunt Sue. Thanks for lunch!! Sorry Anya couldn't attend :(
Saturday, April 26
4/26: Sick again..
Anya started vomiting again yesterday late afternoon. Just like last Friday (4/18) and the one before (4/11), etc... we started her again on Carnintine last night.
We recently met and have been very happy with many of Anya's new docs here in Wisconsin. It has been quite a refreshing change to see the greater level of care and communication between the specialties, as well as there much more rapid response and sense of urgency. No revelations yet as far as a diagnosis goes but at least we now feel like she is finally being looked at seriously.
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