1/31 Anya

Anya is back in the hospital. She is still throwing up. As of today, it has been 3 weeks of throwing up everyday. They will give her an IV for hydration and do some upper GI tests to see if they can see the cause of the vomiting. Please keep her in your prayers.

 

 

1/25 coming home

We are going home. Anya's holding down fluids & formula. She was 'topped-off' with IV fluids. She had elevated piravate (3.4) but everything else looked fine... We'll see what tonight & tomorrow bring

1/25 Anchor Center update

Our visit to the Anchor center went well. Anya can see at least at the level they feel necessary for visual learning. She still prefers looking at object edges rather than at the object itself as 1 or 2 month old would. She appears more responsive to periferal stimulation then to objects straight in front of her. She has a long way to go, but its possible. They gave us a bunch of visual exercises to do with her to help develop the skills that would normally occur naturally.

Yes, she's still been getting sick. I think we're on about day 16 of this. Yesterday was a really rough day, as was this morning, but this afternoon she been holding food down. I'm at Childrens Hospital right now to make sure she's not slipping too far behind in weight or hydration. I'm so thankful God blessed us with such a strong girl. Her poor brothers, they won't stand a chance against her when they all start fighting...

-dad

1/20 Quick update / news

Just two quick notes: 

 

1)  Anya's first tooth popped through (bottom, front, left)

2)  Aksel pooped in the potty (at 19 months, at-a-boy).

 

1/20 Puking Still

This is getting very depressing, she is still puking. We will not be updating her journal until she is done puking for at least a day or two, which could be a while. It's just to hard (emotionally) to keep writing the same thing.

1/19 Pretty good day..

Anya was having a good day but then around 4:30 she just got really tired
and started vomiting again and lost everything she had from her 3 o'clock
feeding. However, as I write this now she is doing MUCH better. Katie was
just getting her to giggle by blowing in her little armpits. She appeared
really wiped-out when she was sick but now her energy appears to be back
okay.

1/18 Good Day :)

Baby girl had a good day. No vomiting (well, one little one but we'll let that slide).

1/17 Thought we were in the clear

I really thought Anya was going to get through today with out vomiting. Wrong! Just in the last hour she has started vomiting. Hopefully today will be a short day and by noon she will be keeping food down. It has now been 1 week of vomiting. What is going on? I hate the uncertainly of all of this. Please God give Anya a break from this horrible disease. It is breaking my heart more and more each day. Seeing her go through this,

is so painful, to not be able to help my sick child is almost unbearable. I love you precious Anya.

Not too bad of a day afterall

Anya only vomited a couple times this morning and ended up getting and holding down the rest of her feedings okay, granted they started of diluted w/ pedialyte to ramp her back up. So she didnlt quite get her full caloric intake but she got fluids.

We spoke with a dietician today and are going to be trying her feeds a bit different to see what happens. We have been feeding 150cc's @ 150cc/hr @ 9,12,3 & 6 o'clock then a slow nighttime feed of 550cc @ 55cc/hr at 9 pm. Now wee are going to try 165cc @ 150cc/hr at 6, 9, 12, 3, 6 & 9 and give her digestive system a break at night. Every time she gets sick it has been in the morning after long continuous feed. We'll see how she does...

1/16 Puking Again

It has been since last Wednesday that Anya has been vomiting. Friday and yesterday were the only days she has managed to keep all her feedings down. Yesterday she seemed to be back to energetic Anya but, this morning I walked in to her vomiting. I now wake up every morning with a gut ache. How long will this go on. What is her body trying to tell me? I am so worried. This just isn't her normal 12- 20 hour cycle. We called her doctors yesterday to see if there is anything we can do, and they seem to think we are making this whole thing up (CVS- cyclical vomiting syndrome). A doctor asked me, " why do you feel Anya has CVS"? Hmm really doctor? Oh maybe because she fits the description to a T, maybe because we've done our research. Yes, I'm a bit frustrated! Well, I need to get back to watching Anya, I'll update more later.

 

 

1/15 so far so good

Well it's 9:03 and Anya still hasn't puked! We haven't tried feeding her but..... She did sleep really well last night, which makes us a little nervous, because that is usually sign things are going to get worse. We'll write more later, I don't want to jinx anything :)

Picture from new years eve..

You have a new Picture Mail

Anders at his friend Sashea's B-day Party! What fun!

You have a new Picture Mail

sasheeas birthday

1/14 still going

Just an update: Anya is still vomiting. She puked last at 2:00, everything, all her vitamins and pedialyte. She does seem to have a bit more energy and not as lethargic. So that is a plus. I'm hoping by bed time she can keep pedialyte down. Yes, we do worry about dehydration, but we feel as of now, there is no reason to take her in to the doctor. As parents, I think we have intuition of when things get really bad and we just don't feel it's necessary quite yet. We'll update later......

Poor girl...

She stopped vommiting yesterday at around 2 and was back up to her regular feeding schedule by bed time. She did fine through the night. At 7;30 this morning she started vommiting again ever 5-10 minutes. At least through all this we are beginning to recognize patterns. When she sleeps 'good' it is not that she is actually having a good nights sleep. It seems more that she just doenlt have the energy to wake up. It is more a state of extreame lethargy then sleep. We notice too that when she ges like this and we 'burp' (through her through g-tube) she consistantly has a lot of food in her belly that appears undigested. So she doen't seem the have the energy to digest her our food.

11/13 Puking Again

I knew it was too good to be true, Anya slept until 8:00 this morning but she started puking. That seems to be a clue, when she sleeps in..... she's getting ready for a rough day of vomiting. This is really depressing because these vomiting spells are getting much closer and longer. Her last spell was Wed. and lasted through Thursday morning. She's only gotten a couple feedings in before this next wave started. I am very concerned, I'm not sure what this means.

1/12 Good Girl

Well Anya finally stopped vomiting yesterday around 10:00 am. She had acupuncture at 9:30 and he hit a point that helps with vomiting and nausea. That did the trick! She has been able to replenish her fluids and keep food down. Today she has been in a really good mood, and her chorea has been really minimal. Yay!!! She is sound asleep (6:30) and she may just sleep through the night. How fantastic! Off to a good weekend. We don't have many plans this weekend, it's suppose to be really cold! Just some good family time and then we have Sashea's B-day party(a friend of Anders) at the Butterfly Pavilion on Sunday, should be really fun for the kids! Hope everyone has a good weekend.

 

 

I spoke to soon...

She started vomiting again around 4:45am.  She held down some food for a while. Pedialite at 15cc/hr from 11pm until 2am and a pedialite/formula mix at 55cc/hr since 2am unit 4.  At least she's getting some fluids.  That is one of the nice things about her GI-button, we can really help keep her from dehydrating...

Anders Christmas Program

Here's a clip from Anders X-mas program last night View Video. Click your browser's "Back" button to return to the journal

Christmas Photo

Anya'sgot me up late so I'm just playing with our new blogger features...

From Christmas_Card

Stopped vomiting but still awake

Anya hasn’t vomited now since around 11pm last night. She awoke from her typical lethargic state, as she gets in when she has these vomiting spells, and appeared hungry (or something) around 12am. Katie was up with her and somehow got her back to sleep by 1:30am only to awake again now at 3:45. Her chorea movements now and at 12 were pretty wild and also included a lot of tongue thrusting. On top of her root issues she may be teething as well.

A rough day...

Anya has been vommiting all day again today. She really seems to hold to her 9-day vommiting cycle. Hopefully she'll be alright this evening for Ander posponed Chrismas Program. There's no way we're missing that! His first time on stage.

A good nights sleep

Anya slept great last night until 7:15 this am. This has got to be the first time in a few weeks she's slept past 3am. She's been doing okay this morning. She spent about 10-15 minutes in her Johny-Jump-Up doing some head control exercises. Now she is sleeping in her swing. She's been coughing a bit, almost threatening to throw-up but so far so good.

Side note; We really want to thank EVERYONE for all their guest-book entries viewable by all and countless emails we've received from family members, old friends, new friends and caring strangers. For those of you who have sent emails, I apologize if we haven't responded yet. As I'm sure you can imagine, we don't get a lot of time to sit down, and those times that we do get, lately we've just wanted to 'veg-out', not think and recover. But please know we receive and greatly appreciate all the kind, thoughtful words of encouragement and your prayers. (I actually get them on my cell phone right when you send them) They bring joy to our life. We love you all. Thank you. P&K

And now she's puking..... here we go...

Another good day

Sorry I haven't posted in a while. I know some times that makes people nervous, thinking Anya may be sick. Anya has been healthy for the last couple days. Her congestion had gotten a little worse after her last vomiting episode but I think she may have had a little cold. She seems to be doing ok now, her herbs really seem to help. We can tell if we back off for a couple days that her congestion gets worse. She's been smiling a lot lately, which makes my day! She has also been looking to the left so much more, which Anya def. prefers her right side. I really think the acupuncture is helping. Today he (the acupuncturist) did some points around her throat to hopefully get her swallowing. That would be wonderful! Well, I'm off to bed.

Anya stopped throwing up

Late last night Anya finally managed to keep some food down. I was getting very worried she would become dehydrated. Today she is very hungry, she can barely make it 3 hours between feeds. We had acupuncture today and PT work. She worked hard during her PT session, good girl. Hopefully she will have a good nights sleep tonight, I think she could really use some. She gets very wiped out after vomiting all day.

Yesterday was a very rough day for me, just thinking of this aweful disorder that is ruining my baby girls life. Just seems so unfair. Anders knew I was having a bad day and seemed very sad at the end of the day. When I tucked him in last night, I asked what was on his mind, he said... the world and our family. I knew he was thinking about Anya. This morning he said, do you know why I was sad last night? He said, I want Anya and you to be happy and healthy and for me to be sick instead...................... It breaks my heart. I love my children so much and appreciate everything God has given me. I am a lucky mom to have three wonderful kids.

Happy New Year

Happy New Year! Sorry we have not updated Anya's site in a while, we've been busy with the Holidays. Of Course, the Holidays were eventful! Pete, Aksel and I were very sick for the whole week of Christmas. We had strep throat. Oh my goodness, Pete and I were laying on the floor for 3 days just getting by. We had the chills, achy joints, fever, headaches, sore throat, UGH it was not fun. It really makes you appreciate being healthy, wow! All five of us are on antibiotics. Anya managed to remain healthy, which is very unusual. New Years was spent watching the Packer game, and they won! Anya woke up New Years day vomiting. This cyclical vomiting syndrome is nasty, I'm so worried she will get dehydrated. She has still been vomiting today as well, which this is the longest she has gone on. Usually, she is done with in 11 - 12 hours we're going on 2 days, I'm very concerned.