Off to the Doctor

Good Morning, we're off to the doctor, this time it's for Aksel. I think he may have an ear infection. He was up all night (along with Anya but that's not unusual) with a very high fever and crying. That is not typical of Aksel, he's our good sleeper :) I want to have him checked before everyone leaves for X-Mas. While I'm there I will have Anya checked too, she's bound to get whatever he has. He's had a really bad diaper rash as well, diapers creams do not work! All three have been very sick this week with colds. We could have three cranky kids for X-Mas, oh what a treat :) At least the power of gift opening will get Anders in a good mood. Hope everyone has a healthy and Merry Christmas. In the hustle and bustle of Christmas please remember what a blessing it is to be with loved ones.

Happy Holidays!

Pete and Anya made it home

Pete and Anya made it home at 6:45 this morning. They had a rough night. Anya was throwing up all night and her chorea was really bad, therefor she did not sleep. Which means Pete has not slept yet. Anya stopped vomiting this a.m. and is taking i. Pete said the roads were still awful the whole way home. EVERYTHING is closed today. Pete is now just doing a little shoveling then I will make him go to bed :)

Of course last night Aksel was up most of the night! So I just went to bed at 5:00 and got 2 hours of sleep. I guess when it rains it pours!!! Although, I can't complain, my whole family is with me now and that is all that matters. So we need to get a little rest and then it's play time, I can't wait! The snow is beautiful.



Katie

Huge Snow Storm

Well, we will def. have a white X-Mas! So far we have 10-12 inches and should get 24 inches by tomorrow am. I can not keep up with the shoveling!! Bad news is Pete took Anya in to Denver for her acupuncture appointment and now can not get home. I'm worried about him driving so I think they may stay at a hotel. This is the last thing I need to worry about! I know Pete will take care of my baby girl and make a smart decision whether to drive or not. Gosh, I'm such a worry wart! Well that is it for now.

UPDATE - 7:30Pete and Anya are staying at a Hotel in Denver until the storm dies down, sometime tomorrow afternoon. They left at 9:30 am this morning and finally gave up at 4:30 this afternoon. That's how bad the weather is. I guess the highway is filled with vehicles that have either been abandoned or people still waiting in them. I guess police officers are going to try to have them leave their vehicles and will be taken to the closest shelter (Flatirons Mall is open for them) so things could be worse for Pete and Anya but..... Pete said Anya has been vomiting most of the day (she has a cold) so I'm sure he won't get much sleep tonight. I feel so bad I can't help out in watching her, it's a full time job and Pete must be exhausted. Well, I just got the boys to sleep and most likely will go to bed soon, in-case Pete gets home tomorrow and hasn't slept, I will need to take all three for the day. Good Night.

Katie

No news is good news...

We had our appointment today with the geneticist and fortunately didn't learn much. I would say no news is good news when it comes to those appointments. They didn't find anything suspicious with her last panel of blood work. This is a far cry meaning we are in the clear however. Mito is difficult to diagnose, especially through blood work or spinal fluid labs. The best indicator comes from a muscle biopsy which we understand to be quiet an evasive surgery and take several months to schedule and even more for results, and there are only a handful of places in the country that can facilitate a fresh biopsy. Because of those reasons, muscle biopsies are usually the last test you'd perform. Even muscle biopsies are not 100% conclusive. So again, no news is good news (or at least as good as we could hope for). It means there's a chance it's not Mito, a chance it's something else, a chance it's not progressive, a chance it's curable (so I'm a wishful thinking father).

Next step, more blood work drawn today; checking Copper, Ceruloplasmin, Carbohydrate Def Transferrin, Creavtine Guanidoacetate, S-Sulfucysteine, Carnitine. Don't worry, you won't be tested on these.. To other Mito parents asking 'why didn't they check Carnitine earlier'. We're not sure. To everybody asking 'why didn't they just check all these earlier so you don't have to wait another several weeks'. There again, not sure.

Enough of that stuff. Now to the good news. Anya has been doing awesome the past two days! I'll write more in a bit... got to run.

-dad

Little tiger still hasn't slept...

It's now 5pm and Anya still hasn't slept a wink.. But she also hasn't vomited , nor is she lethargic.. Speaking of vomit.

CVS+ It looks like Anya may have Cyclic Vomiting Syndrom "+". This 'name' was brought up about a month ago by Elena's mom (thanks Mindy). We did a quick google on it but it didn't seem to fit so we dismissed it. Katie was surfing last night and ran across it again, this time what she found seem to match exactly (not sure what happened the first time...). There seems to be a pretty strong tie between this and Mito. We're researching more now. It would be so swell if just one of the many GI docs Anya has seen would have come up with this. Then it might just justify her $300,000+ (and climbing)medical bill...

We'll try to post more on CVS+ as we find it. The "+" part is the hypotonic, developmental delay, neurological issue part...

Another Sleepless Night.

It's just past 4:30am and Anya has had a rough night and is still going... She quit vomiting around 11:30pm and has been kicking, squirming, throwing punches, and scream/crying ever sense. She's still 'dancing' now. I'm just making coffee for Katie's morning shift. How much suffering can this poor girl take.

Anya's sick again

Anya had a good night last night and seemed fine this morning but around 10am she started vomiting and hasn't quit all day. She very lethargic but doesn't seem to be in any pain. She either got what Anders just had, is affected by the herb Anxiety-Free we a started giving her or is just trying to meet her weekly quota of being sick once a week. I doubt its the herbs but we'll take a break from giving them if she's not better tomorrow.

A good night but a sad day...

Anya is doing well. She slept good last night and actually just took a nice 20 minute cap nap. It's is a painfully sad day today though as we are reminded of the realities of what we may face. Anya's condition has opened our eyes to an entire community of parents just like us; taken into a world we never thought possible. Today, one of those families morns, as does the rest of this community, for the lossof their baby girl, Morgan. Morgan was 2 1/2, has an eerily similar medical history to Anya and was diagnosed with Mito just this past May. She her story here.

Good day so far.

Nothing really new to report. Anya has her 2nd acupuncture treatment yesterday afternoon and slept great last night from 8-6am, soundly. As we've mentioned earlier her mucous had been dramatically improved and for the first time this morning she woke up w/ absolutely no build-up around her mouth this morning or drool on her bed-sheet (now me on the other hand, that's different story..)

We are going to continue with her Manjistha and Colostrum and we introduced Anxiety-Free (click for details) this morning. I'm a little nervous introducing something right now becauseAnders (older brother) was up sick last night. It was his first time ever vomiting before; poor little guy. Its scared him. He claims to have had a sore throat and is sick but I have a feeling he was getting into the sugar cookie dough last night when we were making Christmas cookies. He seams fine this morning but if he is sick I'm afraid Anya might get what he had...

Madison move on hold

We've decided to hold off a while (1,2-6 months?) on our move to Madison. It was a very difficult decision, yet at the same time, clear. We promised Anya we will do anything and everything to help her. We really wanted to give her hyperbaric oxygen treatment, having family closer by would have been great and most of all getting new/more doctors working on her. However, we have seen HUGE improvements in Anya by following Dr Douillard's (Ayurvedic doc) suggestions and we found what seems to be a well suited match for Anya with an Acupuncturist, Dr. Lixin Zhang in Denver. So we need to exhaust all our possible resources here before moving to a place where those therapies, especially to that caliber, would not be as accessible. Staying here will also give us the opportunity to take Anya to The Anchor Center (Center for blind children) so we can get a better assessment on what her vision capabilities are and how we can help her.

Regarding the Ayurvedic treatment, Anya's mucus issues are essentially gone! We used to have to suction her with a little electric suction pump several times per hour. Since we started Dr. Dioullard regimen we have maybe turn on the pump 3 or 4 times in the last week. We're trying not to be over optimistic but I think this is the first time we've been able to help Anya in any way (and it feels good). Of all the other drugs she's gotten for any sympton (prevacid, zantac, chloral, benadryl, etc) this is the first time we've actually had any success. Thanks Doc! We're excited to meet with him again next Friday to tackle her other issues.

The Acupucturist works a lot with stroke victims and other brain injuries. Hehas experience with peds. and infants and He seems very intellent and knowledgable, and thinks he can really help our baby girl...

Less Mucus

I can't believe it, Anya is still sleeping! It is 9:00 am and she has been sleeping since 8:30 last night! This is a first! She needs sleep so bad. We didn't have to use any medicine to induce sleep, she did it all on her own. Not sure why. She did have an acupuncture appointment yesterday, hmmm. Her mucus has gotten so much better. Def. not as much as she used to have. The herbs she is taking has really helped. That is great, we used to suction her every 30 minutes, not any more. I think that might be helping her to sleep as well. Today we have a pulmonary appointment at Children's, so we'll see what they have to say about her trachea.

On a side note, the apartment we thought we were going to move into at the end of the month (in Madison WI) turned out to be only a 2 bedroom with a loft. I don't think our family of 5 will fit! So we are back to looking for alternatives. I think we will have to take a bit more time to look, so we probably won't be moving as soon as we thought. Which is ok for right now, I feel like we are at lest moving forward with some things here in Denver.

Have a good day!

Little wiggle worm...

Hi All. Anya's been doing fine the past few days. Her chorea movements has been in high gear lately. She slept pretty well from 9 last night until about 4 this morning but woke up a'wigglin. Getting up at 4 has been the norm for the past week I'd say. Why didn't any of my kids get my sleeping-in gene?

Her overall health has been good. We met with Dr. Dioullard, an Ayurvedic doc on Friday who offered a program to help with her excessive mucus. He seemed very knowledgeable. I wish I could tell you what he all said but it was a bit beyond my level of comprehension. I understood when he said "Hello, my name is John" but everything after that was over my head. Katie could probably tell you; she's good at that stuff. I will say that what he told us about what is going on in her body and how and why it is responding the way it is, made sense, but I don't get why or how the herbs he prescribed will help that. But then.. it's not my job to know. It's his. Just like I don't get how or why phenobarbital or topamax or prevacid or the countless other drugs she's had works (or should I say, didn't work).

We started the first prescribed herb, Manjitsha and Colostrum the minute we got home Friday, and I will say (although I know it is too early to tell for sure as she does fluctuate) her mucus production, and therefore her 'gargling' and the amount we're suctioning her, has seemed greatly reduced. Fingers crossed.

And She's Sleeping

Well after a very long day, Anya is finally asleep in her crib. She's been up since yesterday at noon. I don't know how she does it! Her chorea just gets so out of control she can't settle down leading into a cycle. I really didn't think she was going to fall asleep any time soon, she was going strong at 7:00 pm. I tried rocking her but that got her even more awake so I put her in her bed with a pacifier wiggling like mad. Then boom, 2 minutes later and she was out! I don't get it, it's like the switch was turned off. She went from out of control to sound a sleep. So needless to say, I am off to bed before she wakes up! Dang it, now if Anders would just stay in his bed. Off to put another kido to bed, AGAIN!

Long night...

Well, Anya had been vomiting non-stop all day up until around midnight. We put her on straight pedialite to keep her hydrated at around 2pm at a slow feed rate. She was also very lethargic but, wouldn't you know, she's not any more. Her chorea is really bad tonight. She's all fired up! Isn't in pain, just moving a lot and sucking like crazy on my finger. Won't take a pacifier. I tried a little thickened water and she really liked it but I'm afraid to do to much as she typically starts coughing it all up after a few cc's especially when her chorea is bad. We try weighted blankets to help stabilize her movements a bit but when she is this bad she can kick and throw them off quickly. She also squirms her why out of a swaddle. I'll be very surprised if she sleeps tonight. Silly kid.

Poor baby's sick again....

Well, she had a good run of health for a couple weeks. She always seems to be well when we have family here to help, hmmm. Nana and Papa G left around 12 and she has been lethargic and vomiting since then. We're going to start feeding 50/50 formula/pedialite for the rest of the day and see if that calms her belly.

Tuesday

Sorry I haven't posted in a while but really not much to report on. Anya has been doing pretty well these last couple of days. This morning she did throw up a little bit but Pete thinks it's because she drank too much water so who knows. Hopefully that will be it. She took a 2 hour nap this a.m. which is fantastic. She's been looking in the mirror for the last 20 minutes smiling at herself. She thinks she's pretty cute! We did call her ped. yesterday to inform them that her medicine (Topamax) she's on is not helping with her movements. So they may up her dosage or try a new drug. I really wish there was something "natural" that we could try for these movements, I hate the drugs! This Friday we have an appointment with an Ayurvedic doctor, that should be interesting maybe he can help with all the mucus. Fun stuff!

Have a good day.

December already!

Oh my goodness, I can't believe it's December already, these months have flown by! This will be a busy month for us. Anya has some big doc.'s appointments coming up and anxious to see if we learn anything new. Also, Anders 4th b-day, which we have already celebrated 3 times so far!!! Anya has been doing ok these last couple of days. Yesterday, she was very content, smiling and hardly any movement. Today is going pretty well also. She's upstairs taking a nap!

Having a Great Week

Anya has been amazingly well the past week. It seems like a couple days after receiving CoQ-10 her eye contact has been much improved. She's been able to track objects and fixate or focus on objects for a period of time. She has also been smiling alot and even giggling. Prior to this past week Anya has only giggled perhaps twice in her life, and those were very brief moments. This has been so awesome to see. Whether or not its the CoQ-10 enzyme doing it is unknown.

We've upped her dosage of Topamax to 18mg/day but still no change in her chorea (movements). She did also vomit her entire feeding on Monday morning but nothing since.. Her sleep has been great; through the night (pretty much) and taking an hour or two nap each day.

We've started to re-introduce a bottle again w/ thickened water. She really seemed to have lost her suck during that most recent spell of being sick. She's doing ok with it but has definitely regressed. She maybe swallows 5-8cc /day (about 1/4oz).

Monday

Hope everyone had a nice Thanksgiving. We had a great turkey day! Brian and Sandy (my in-laws) were here, which made it extra special. The kids love to see their nana's and papa's. Anya has been WONDERFUL. She has been so much fun. She's been smiling and giggling so much in the last couple days! We started giving her COQ10 and have seen some improvements. The OT came today and thought Anya looked a lot different, in a good way. We will be starting PT work soon to work on some of the gross motor skills Anya can't do (ie head control, rolling over...) We're going to Special Cares Clinic at Children's' today and may find out more results of blood work that has been taken.

Have a good Monday!

Good Mornin'

Yay! Anya finally fell asleep last night around 7:00 and slept through the night. That's great! Pete and I were able to get some much needed sleep. Today she is really mucousy, not sure if that's a word but.... you get what I'm saying :) I don't know why she produces so much mucous. Her body is def. trying to tell me something. I'm sure I'll learn the reason for it soon there has to be an explanation for it. Our friend Mindy (she has a daughter with Mito in WI) suggested melatonin for the nights Anya has trouble sleeping. Makes sense to me, I am going to ask the doctor tomorrow when we go in for her check up. Thanks Mindy for the info. Well that is it for now. After being couped up in the house yesterday we need to get outside. I need fresh air. Maybe we'll bring Anders and Aksel to the park, that sounds good........... Have a great Sunday.

Another Sleepless night

Good Morning! Anya had another sleepless night. She's been very agitated all night. Her movements get really bad when she's tired but because of her movements she can't calm herself and sleep. This movement disorder (chorea) is so unfair. She looks so frustrated with her arms and legs flailing around. I can't imagine what it must be like to be trapped in a body that doesn't settle. Yesterday, she took a 3 hour nap, which is great but I had a feeling we would be up all night. Ugh! We'll see what today brings us. Hopefully she can calm her movements and get some rest. She is on topamax for her movements but I don't think it is working, we may have to up her dosage. Who knows, this is all one puzzle..........

Happy Thanksgiving

Anya has been having a good day so far. She actually just took a 2 hour nap, which never happens! That's so good for her, she has a lot of sleep to make-up for. Last night Nana Gumness was telling Anya a story and Anya actually started giggling. She GIGGLED, that is huge!!! I haven't seen her giggle in a couple months. That made our day. We have learned to appreciate every little thing Anya does. We are so grateful for those smiles and giggles.

Today is Thanksgiving and I am so thankful for so many things. I am thankful for all of you! The love, support and prayers you have given us through these last couple of months has been amazing. I feel so fortunate to have such wonderful friends and family. Our family is truly blessed. Thank You.

Anya is finally holding food down

Well, Anya is finally holding food down. She hasn't gotten sick since yesterday morning. I was really getting concerned she has been sick since last Tuesday. She is taking pedialyte and formula. Hopefully today we will be able to give her just formula and she will tolerate it. We went to the doc. yesterday and she has lost a 1 lb. She now weighs 11.11oz. She really needs to gain some weight. The Holidays are coming up, everyone gains weight around this time, right? Although, it's hard to stuff turkey down her G-Tub, oh well.

Happy Thanksgiving!

Not so good today...

Another set back today. Anya again has been vomiting all day. We tried going back to a formula she had been on previously with out problems earlier in the day but still can't hold anything down... poor girl.. She's back on Pedialyte again but we added a multivitamin to offer a little more nutrition.

On a good note, we got her Neurologist Report faxed to us today and she is now officially diagnosed as "a pretty baby"... we knew it!

It's been a really good day!

Anya slept great last night, granted it was mildly prescribed drug induced, but still she needed sleep. She actually looked tired at around 10:30 so we put her down and she fell asleep on her own for a nap (that is very rare fro her) and slept until 2:30 when i woke her. Since then her eye contact has been great, she smiled again and still no vomiting through two whole feedings of regular formula. Today is a good day...

Got another smile!

Anya slept GREAT last night! She slept from 5:30 until 10pm, was up for an hour and then slept until 8am. She is still on pedialyte only and hasn't vomited any significant volumes since yesterday afternoon. She is sitting in her theory chair right now to help work on strengthening her neck muscles and she just gave Mom a little smile. First smile in five days...

11/16

Anya was vomiting A LOT the last 4 days. We started feeding only taking pedialite to keep her hydrated at around 10am and at around 1:00pm she has been looking good! Good eye contact (for her), not vomiting, seemingly content. Ups and downs...

Sleepless night

Long day of vomiting isn't enough to wear her out. Anya was pretty lathargic most of the day. Fell asleep around 8pm and woke up with a lot of gas vented through her g-tube at around 11. She been wide awake since. Not taking bottle, nuk, finger, or holding. She bites pretty hard on finger. Is grunting and moving a lot.