12/30 Anya goes sledding

Anya went sledding today for her first time... More pics here

12/27 Good news / Bad news...

The good news is that Anya finally stopped vomiting. She snapped out of it and got her energy back around 3 this morning. Now she just appears to have a cold she's fighting.

Now for the bad news.. Unrelated to Anya but still a sad day for our family. Our dog, Summit (aka Sum-Bum or Summy), passed away this morning. He was a beautiful Great Pyrenees/ Golden mix who was great with our kids. He was white (when clean), fluffy and a great cuddler. We were blessed with Summit about eight years ago when we got him from the Denver Dumb Friends League (the pound). He loved going for walks or being off-leash and exploring, chasing rabbits (I'm proud to say the old man actually caught one last year. I think he was as shocked as we were when it happened). We enjoyed many adventures (pre-kids) with him like camping and snowshoeing. He had such a calm and patient demeanor, yet a zest for life (up until these past few months).

Summit had arthritis for the past few years but just last week we discovered he actually had MS. The Vet, whom is a brilliant man, suspected the MS was the result of Helicobacter Pyloris. We got the blood work back a few days ago that confirmed his suspicion, unfortunately it was too late. Summy had been going down hill quickly. Last week he could no longer get up or down a single stair. Yesterday he could no longer walk. He slept with us last night and this morning he was unable to even stand so we took him to the Vet to make the heartbreaking decision. As much a it hurt, Sum-Bum always walked with pride (it was cute how he would seem embarrassed if he tripped or missed catching a ball). This morning the pride was gone, he was ready to go... We love you Sum-Bum and we'll miss you dearly... for more pictures, click here.

Merry Christmas

I hope everyone is having a Merry Christmas! What a wonderful day to celebrate with friends and family. We are enjoying some family time as well, and busy playing with new toys! Anya is still sick, we are really trying to just keep her out if the ER. That is the last place I want to be today. So hopefully she will keep down some pedialyte.

 

Merry Christmas and Happy New Year!

Ugh Anya just started puking

Anya just started puking after a long 28 day stretch. I really didn't want Anders's B-day and X-mas to be consumed with this. I just wanted to celebrate all of God's Blessings without being worried for Anya's vomiting. We have so much to be grateful for yet when she starts vomiting I get so worried and can't think of anything else except for how scared I am. I pray she gets better in the next 24 hours so we can celebrate Christmas, Jesus, life and health!!

God Bless

 

12/19 Anya is doing well

Anya is doing really well. She has been smiling like crazy lately! She is truly a GOOD baby despite her health issues. She is such a blessing to this family and we are so thankful for her fighting spirit. Anya is starting to play with some of her push button toys. She really enjoys reading books and helping to turn the page. Very Cute! We got her a Jumparoo and she is doing surprisingly really well in it. She can practice weight bearing and head control as well as play with all the toys that are attached to it.

 

We are still working on gaining weight. She has a metabolism like Pete! Long and lanky!!!! We have started to give her coconut milk, we'll see if that helps for putting on some weight. If she could only have some yummy X-Mas treats. We have been seeing 2 new doctors which we really like and feel hopeful that they can help Anya in some way.

 

Anders will be five on X-Mas Eve. Crazy, I know, I can't believe I have a 5 year old. He's looking forward to his B-day, X-Mas and of course all the presents. Aksel is doing well and curious about this whole Santa thing :) Should be a fun Christmas!

NEW PICTURES!!!!!!

 

12/12 Back From Breckenridge

Just wanted to update quick. We are back from Breckenridge. We had a family vacation before we leave Colorado and can't get to the mountains as much as we would like to. We really like Breckenridge and will def. make it a regular winter visit! The kids had fun and Pete and I are ready for our own vaca:)!!! Funny how it never really seems like a vacation for the parents. So much work but so worth it. Anders and Pete had a great day of skiing while Aksel, Anya and I hung out at the house. So much snow and Anders is doing Blue runs like a champ. We did a little sledding, made a snow fort, went for walks and played lots of games! Anya did excellent, no vomiting and stayed out of the hospital! We are thankful for the time we had together and in such a beautiful atmosphere!!!! Pete and I miss the outdoors and look forward to more ski and camping vacations when it isn't so difficult with the kids :) I hope they grow up to love the outdoors as much as we do! That's it for now, there is unpacking that is calling my name.......

 

11/28: Back home now

Anya and I are home now.  They monitored her oxygen saturation levels at Children's and they remained in the 90's w/o supplemental oxygen.  When we first got there, her levels match what we were finding yesterday and this morning at the pediatricians (mid to low 80's) but once we got settled in to the ER they improved right away.  We'll go back in again tomorrow and check it again...  Overall she looks good and seems to have regained her energy. She hasn't vomited since around 9:30am and is now taking in food and acting more hungry.    I think she'll be fine but I also think we got extreamly lucky to just happen to catch it early. Pneumonia is probably my biggest fear with her as it can get out of control quickly. I said it before and will say it again, She's a fighter...  Thanks all, we appreciate your support, thoughts and prayers.   Time to see if that little bugger is going to sleep now.

Off to Children's

Pete took Anya down to Children's Hospital this afternoon. We went in for a doc. appointment this morning and found her oxygen saturation to not be very high. We need to do what's best for Anya as much as I hate to see her go to the hospital. They will probably be home tomorrow if all goes well. Please keep little Anya in your prayers!

11/27- Pneumonia :(

Anya continued to vomit through this morning so we decided to take her in for IV fluids. Fortunately so..  Routine vitals while being brought in to the ER found that her oxygen levels were fairly low (pulse-ox read 85 where she is typically 98%).  They ordered chest x-rays and found trace evidence of pneumonia developing.  She's now on antibiotics and we'll just watch her closely for fever or rapid breathing and take her back in tomorrow and for the next few days to re-check her pulse-ox.  

 

We also hate to report she now weighs only 15lbs.  We've started to reintroduce foods this evening but her digestion rate appears very slow. 

 

Well, if nothing else, she's by far the prettiest sick little girl we ever seen (I may be bias).

11/26 Anya's puking again

Anya woke up puking this morning. I will update when she is feeling better.

11/26 Sick again...

Greetings all.  I'm not sure if we just got lucky for that 38-day stretch she had but she has been vomiting again (once Satuday night, a few times last night, good through the night but then started again this morning).  Who knows... 

11/20 Doing well

Sorry I didn't get a chance to update sooner but Anya has been feeling much better. She stopped vomiting Sat. evening and has been doing well since. This last episode lasted a long time, 3 full days, but we were able to get some fluids in her each day. The really big problem is that she is losing so much weight which she can't afford to do. So we need to think of something soon to get some weight on her. We are trying to get into a clinic in Houston that specializes in ped. GI. Hopefully we can get her in to see that doc. sometime in the next couple weeks. He could hopefully give us insight as to why the malabsorption problem is happening.

 

Happy Thanksgiving!!

 

 

Nov.17 Still sick

Just a quick update, Anya is still sick. She's been vomiting since Thursday. If she doesn't start holding down pedialite today she is going in for an IV for some hydration. Ugh, what a bummer. Just when we thought we were done with this. We still are very concerned that she hasn't gained any weight on the avocado diet. There are def. malabsorption problems going on just not sure what to do about it.

We'll update later.

11/15

Well it happened, Anya started vomiting late last night. What a bummer. We could tell she wasn't doing well, her mucus started increasing and I knew it was just time before she got sick. We are so happy with the duration between episodes but not sure what triggered it. We will keep up with the avocado and see if it helps. Today she will just get some pedialyte and hopefully be able to hold it down.

11/03 Weight Gain!!!

Yahoo!!  Anya finally broke the 17lb mark.  As I think we mentioned in an earlier posting, out of frustration we changed her food base recently to our own concoction of avocados, brown rice syrup and a bunch of different oils.  Well we finally ramped up her volume of feeds to our goal of  900-1200 calories/day.  She's gotten the full feeds the past two days and is actually acting more hungry. Tomorrow will be 1 full month without vomiting.  The last time was on Katie's birthday, Oct 4th.  We started her new diet on Oct 5th but I'm sure her not vomiting is just a coincedence if you ask any of her old doc... (sorry, still bitter).  Last week Anya was still at her seemingly locked weight of 16.5lbs.  Today she was at 17.15.  This is her first gain since February.

 

We also had an interesting phone consult tonight with a Dr. we've connected with through Wisconsin Hyperbarics.  He explained some of her recent labs with great detail, finally providing a bit of clearity.  I don't want to get into to much of the details but it looks like we need to do a lot of celation (removing toxic metals) for quit some time (6-12+ months, who knows..).  We plan start celation once we have a good regemin in place and after she gains a bit more weight.  The process unfortunately also draws good minerals from her body as well so we need to be carefull.  We are hoping to start at 18months (Nov 22nd).

 

Thats all.  Good night.

 

Happy Halloween

Just a quick update. Anya is still going strong with her healthy cycle!!! No vomiting, I think the avocado "recipe" we made up is working so far. She is also doing awesome with her little tastes of oral feeds. Great job Anya, mommy's proud :) We will post Halloween pics soon. Anya is Piglet, Anders is a skeleton and Aksel is a lion. Also, today was Aksel's first day of preschool, he did great! I was a bit sad but able to get lots done around the house with out the boys, wow, nice!

 

 

October 24 We're back

Hi everyone, sorry it has been so long since our last post. We were in Madison WI getting Hyperbaric Treatment for Anya at Wisconsin Integrative Hyperbaric Center, that place is amazing. We had a wonderful experience. I just want to say Thank you to all the staff at the center, they were so wonderful. They made us feel at home and the treated us like family, we were so sad to say good bye. Anya did well in the chamber, we have noticed some good things with her muscles, she seems to be using her back muscles a bit more, and her head is getting better. She doesn't look to the left as much and she is grabbing at her toys so much more. The biggest thing, she seems so happy, she is always smiling and we can get giggles more than we used to. Any little bit, we will take, we are so proud of her accomplishments!!! Our home chamber will be here today, so we will resume dives this week.

 

One more huge improvement, Anya hasn't vomited in 23 days!!!!!!! She was vomiting every 7 days before we switched her diet, we are so pleased. We switched her diet and I think it is making a big difference. Hope all is well with everyone!

 

 

HBOT

Anya started HBOT this week and is doing really well. She is working really hard in her OT and PT sessions.

Pete took Anya this weekend to WI and the boys and myself are joining then today. We can't wait to see Anya and Pete!!

 

Here are some pictures of Anya.

 

http://picasaweb.google.com/katie.jacksonfamily/AnyaAtWisconsinHyperbarics

 

 

 

Thank You

Thank you for all the thoughts and prayers  We appreciate everyone's focus. Anya had a pretty good day and started vomiting around 6:00 this evening. We will update later.

 

God Bless.