6/21 Wonderful day!!!

Anya had a great day today.  Nothing special to speak of.  Just a good & happy day.

 

She had her annual assessment with Imagine! today.  They provide us with all of Anya's therapy services (www.imaginecolorado.org).  They have been absolutely wonderful through this whole process.  I can't imagine doing this without their assistance/guidance.  We have been very fortunate to be set up with such wonderful, caring, knowledgeable people.  During the meeting Anya sat in Katie's lap and just smiled from ear to ear.  Yes, she's given smiles before but these were long-lasting, beautiful, pure happiness smiles.  It's like she just knew everyone in that room was there for her, to help her, to love her.  She feels it.

 

It seemed then for the rest of the day she was just extraordinarily happy.  Katie is up in bed with her now playing with her toys together and you can just tell she is totally grasping the concept of happiness.  I've always felt in order for her to make progress she needs to have desire, some driving force to learn and expand her mind.  After seeing her today I think she's found it; the simple desire to be happy. I think that will take her a long way. 

 

6/18 Getting better.

Anya seems to be doing better this morning.  She continued to vomit throughout the day yesterday which finally subsided around 8 last night.  We started to feed her a formula/pedialite mix around 10 and she kept everything down through the night.  Hopefully now she can just catch-up on her sleep and recover.   Thanks for your prayers everyone...

 

6/16. Rough 24hrs...

Anya's had a rough past 24 hours.  She been very sick and vomiting all day starting late last night.  We've only had her taking pedialite and Gatorade all day and she is having a hard time keeping it down.  Typical wiped-out and lethargic with no warning signs of getting sick.  We'll see how she does tonight and perhaps take her in for IV fluids tomorrow. 

 

I will say it's nice to have to refer to her journel entries to see when she got sick last.  Last time was May 12th so it's been over a month which we're very happy about. 

-dad

 

6/8 Anya's still doing great!

Nothing really new to report but Anya has been doing really well lately. We
got a few more giggles out of her the other night again. Her vision
therapist visited on Monday and has noticed much improvement overall. She
still recommends revisiting the ophthalmologist to see if a vision issue may
be why she so strongly prefers looking to her right. Her tracking has
improved as well. She can now easily track lights in a dark room and is now
fairly consistently tracking objects. She was lying in the center of our bed
the other night and watched me (dad) walk from one side to the other,
turning her head completely from her right, down past her feet and to her
left. Every week is a baby step in the right direction. Tonight as we did
her dark-room therapy I held her wrist up and shined a small flashlight on
her hand and she watch her fingers wiggle so intently. Although the
wiggling fingers were result of her movement disorder, you just knew from
the look in her eyes that she was getting the feedback that she has control.

She has also been grabbing her feet a lot lately which started slowly about
3 weeks ago. And finally one of my favorite things, she slept in past 6
twice this week! Hopefully breaking her 4am cycle.

Go Anya, go!!

May 29th EEG

Anya had another EEG today and did pretty well. They got some good data. She is still showing Epileptic form wave pattern, or something like that :) BUT it is better organized than the last EEG. So there is improvement and we will take it!!!! That is good news. She's doing really well and we are very thankful. That's all for now.

New Pics of Anya B-Day Party have been added to Videos and Photos

 

5/23. Cleveland trip update

We had a good visit at Cleveland (Dr. Cohen for metabolic & Ghosh for movement disorders) and will give an update later. The short of it is we really didn't learn anything new (nor did we expect to). It did confirm we are on the right track by looking at a metabolic disorder. They fortunately aren't pushing for a muscle biopsy yet and they understand why we don't want one. They wanted to repeat a few of the blood labs and we'll get results on friday and set up a coarse of action accordingly.
For now we are stuck on a plane in oklahoma city. Bad weather in kansas city required us to divert the storm but we needed to get more fuel to do so. I guess that stuff's important for keeping the plane aloft. Anya has been great traveling. She's sleeping right now..

Happy Birthday Anya

Today is a great day to celebrate, Anya is 1 yrs. old. Happy Birthday Anya!!!! You've brought so much joy and love to our life. Mommy and daddy thank you for coming into our lives and making everyday so special. You have brought more meaning to our lives than you will ever know. We truly are blessed to have you. We love you baby girl, Happy Birthday.

May 21 Almost 1!!!!

Anya had a really busy weekend. We celebrated her birthday with a big party on Sat. It was wonderful to celebrate such a special day with friends and family. On Sunday all 3 kids had their baby dedication, it was really special. Tomorrow we leave for Cleveland to have a consultation regarding mito and a muscle biopsy. We will also meet with a movement specialist, should be interesting. Pray Anya does well on the flights, I'm a bit nervous.

 

 

May 12

Anya broke her really good run of not throwing up on Thursday. She started after dinner and a little throughout the night. She managed to hold half pedialyte and formula down Friday. It was a pretty fast recovery so that was good!

 

Happy Mother's Day to all the moms! Have a wonderful weekend.

 

 

May 4 Quick Update

Anya is doing really really well. Today she had OT, PT and Speech and they were all very happy with the progress she is making. Everything, her muscle tone (she's starting to use her stomach muscles which is great!), swallowing, tracking, smiling, verbal sounds, it's all coming together!!!! We couldn't be more proud of her, she is def. putting in the hard work to make these things happen. Great job Anya!!! We are so blessed to have been given three beautiful children. Praise God!

 

Thank you for your continued support and prayers. They ARE making a difference!!!!!!!

4/28 We got giggles!!!

Just a quick update. Anya has been doing very well. She actually giggled
today when I was tickling her armpits!!! It was awesome! She gave four
quick, cute purposeful giggles. We're so proud.

April 23 Feeling Better

Anya is doing better. She started to hold pedialyte down Sunday morning. She did get dehydrated but we were able to quickly replenish fluids once the vomiting stopped. I'm hoping today she has her energy back and gives us some of those beautiful smiles.

April 21 Baby Girl is sick again

Anya started vomiting this morning after her first feed. She has had a ton of congestion. I don't understand why mito kids have so much congestion, I would love an explanation. It is so hard to watch her sick especially when only 5 days have gone passed since the last spell. I worry so much for her. Her tiny little body working so hard to cough up this mucus. We'll see what tomorrow brings....

April 19th Anya is feeling better

Anya is doing much better. She stopped vomiting Tuesday afternoon and has been able to keep pedialyte and formula down. She's been in a lot of pain from her teeth, she has at least 2 or 3 teeth coming in. She has been grinding her teeth a lot, I know she is in a lot of discomfort. Plus she also has a cold which could have caused the vomiting. Who knows! This illness is so unpredictable. Today she has PT and OT, hopefully she'll have the energy to work on head control and some swallowing exercises.

 

Today Papa K and Uncle David come to visit. The boys can't wait, should be a great weekend.

Have a good day!!

 

 

April 17 Still sick

Well I thought Anya was on the up swing, she was looking good and seemed like her energy was back. Then around 10:00am she started vomiting again. She managed to keep most of her feeding last night, so she has had some formula and lots of pedialyte yesterday. We are not too concerned about dehydration but we will really watch for any signs and take her in if we need to. It's stressful just watching her, should we take her in, should we start pedialyte, did she have a wet diaper, do her lips and mouth look dry, does she seem lethargic?? Ugh!!! I get pretty stressed out the days she is sick, so many things to take into consideration. Please Lord help Anya to feel better soon, keep down her food and bounce back quickly from this vomiting spell.

4/15 Not doing so well today...

Anya was having such a good week (10 days since her last vomiting spell),
but around 3:00 this afternoon she went down hill pretty quick. We should
have seen it coming as she did give us her warning signs of being unusually
tired and had two good naps. It was unusual however for it to be so late in
the day. Typically she starts this around 8 or 9am. Hmmm. This girl just
will not give us a pattern to help us figure her out... All we got is every
7 to 10 days it hits the fan. She's still tough as nails though and will
bounce back.

On a good note, she made a huge leap forward a couple days ago while Katie
was working with her doing some therapy. While lying on her belly she
pushed her elbows down into the ground and was able to lift her chest up off
the floor for a moment. Katie was just screaming with joy. I love those
moments, they are our driving force...(well, one of many driving forces).

Had to share this...

 

Aksel's potty training isn't going so well...

April 11 and all is good

Just a quick update. Anya seems to be getting over her cold and the congestion is getting better. She is doing much better than last week. Still doing really well in her PT and OT therapies and we hope to start speech soon! We continue to do cranio and acupuncture which I think are helping enormously!!! I am so grateful for these two doc.'s, they have given us so much hope and have helped us to remain really positive for Anya's future.

 

 

April 6 Good Friday!

We're back from Telluride. We had to cut our vacation a little short and head back Wed. Our trip didn't go as planned but at least it made coming home feel really good!!!! Anya got really sick Monday morning which of course lead into her vomiting. She continued to get sick until Wed. afternoon. This was a long spell for her. I really think it was more of a cold that made her vomit instead of her usual cyclical vomiting spells. Aksel, Anders and myself have colds and I'm sure she picked up the bug from us. The car ride home seemed so long! I was so worried about Anya being dehydrated, she was not looking good. Then about 30 minutes into our trip back Aksel threw up in the car. Ugh! What a trip. We did have to stop at the ER in Breckenridge so we could re-hydrate her for the rest of the car ride home. I think we learned our lesson, not to vacation 7 hours away from home :):)

 

Anders and Pete did manage to ski a bit on Tuesday. Anders did great, he can do blue runs and Aksel did awesome on the magic carpet!!! The boys had a great time. 

 

We are all doing much better and happy to be home!

 

Happy Easter.