It's all about Ana

It's been so long since I posted

2011-04-14T07:07:00.000-07:00

I couldn't even remember my password to log in.

Not a lot has happened. My mom was here for almost 9 months and then my in-laws visited for a month. It was nice to have some help around with Ana. She liked them around, too. I thought she would have hard time adjusting to other people in the house, but she was just fine.

We're still working on the same things, sitting up independently, using pictures for communication, etc. Her fine motor skills have improved a lot. Her OT uses an Ipad with her and she's doing great (cause-effect, eye-hand coordination) (she is not able to use for communication yet), and I'm trying to get funding for one, but I'm having no luck.

I wanted to try hippo therapy (the insurance covers it) but our developmental pediatrician thinks she needs better trunk control for it, so we'll wait, maybe in 3-4 months.

In short, that would be it. Till next time.

Gait trainer

2010-08-26T15:24:00.001-07:00

I just wanted to post a photo of Ana in the gait trainer we use at PT. This is actually the first time she sort of stands in it. Before, she used to hang in it, screaming and crying. She is not taking steps, but even this is a great improvement from where she's been.

Some updates

2010-08-19T10:41:00.000-07:00

So, I have disappeared for a while... um... a couple of months. I don't think I've posted since my mom got here. She's been of great help, and she's having a great time with Ana. I finally joined a fitness club and started yoga and pilates. I'm so out of shape.

Not much going on with Ana. She's doing great in therapy, we're now using Rifton gair trainer at PT, and she stands in it (not taking steps yet) for about 15-20 min. At home we're using the Tristander for about an hour daily.

I decided to try HBOT for Ana, so we'll be going to St. Petersburg, FL in October. There's a place that offers free HBOT and you just need to donate what you can. I was planning to do this about a year ago when we were told that she has CP, I have scheduled the treatments, but then, when we got her CMD dx I canceled since I thought it wouldn't be beneficial. But lately I've been thinking about it, and then I read a blog for a child who has a similar condition and he's been receiving HBOT for a while now. His parents report great improvements. So I gave it another thought and since it can't hurt her, we'll try it out.

Equipment wise, we're waiting for an adaptive stroller (Stingray from Snug Seat) and a bath chair. I was thinking of maybe getting a Special Tomato Sitter (only the seat, that goes on a regular chair), so that we can use it while in St. Pete.... why is SN stuff so expensive??

Until next time.

Please vote for Cure CMD

2010-06-19T09:29:00.001-07:00

I have added a button to vote for Cure CMD on Facebook. Please vote!

Thanks,

Its' been a while

2010-05-21T11:16:00.000-07:00

It's been a while since I last posted here. Updates:

1. My mom will be here next Wednesday!!! Yup, you read that right. I'm beyond thrilled.

2. I have a job interview next Monday. Hope all goes well there.

3. The Tristander and the Kimba are on their way over here. Yee pee. Estimated delivery is Thursday.

4. One of my husband's clients turned out to be a social worker in a SN school. She offered to find some equipment for us. Wouldn't that be great!

5. We'll be placing a request to the insurance for a bath chair (Rifton) with a shower stand.

And a request for either Rifton activity chair

or Snugseat X Panda

We'll be trialing them both next week.

Little miss sunshine is doing fine. Getting more vocal (read: screaming) when she gets frustrated. I think she finally realizes her immobility and gets very agitated because of that.

Therapy is going fine. Our OT will be leaving, moving to Atlanta, and our ST will be on maternity leave during the summer. I hope Ana handles the changes well. Here's a photo from today's PT session:

Oh, I almost forgot. I will be attending CMD Family Conference in August and as a participant I was asked to raise some funds that will help cover expenses related to the conference. If you are interested in becoming a benefactor, please let me know and I'll send you the benefactor letter.

Until next time...

My mom will be here in June

2010-04-20T09:16:00.000-07:00

Did you hear that? She'll visit us for the first time in 6 years. Not that she didn't want to come earlier, but she was denied visa by the US Embassy 3 times (on one occasion I was in hospital (bed rest) for 10 weeks and naturally, she wanted to come and see her daughter. "No no". Consular officer says. "You're a potential immigrant". Well, she wasn't a potential immigrant at that time, cause she had no intention of moving to the US, she wanted to come, see where we live, and go home after a month or two.

Now she is. Since I'm a US citizen, I filed a petition for her and she'll be getting her green card next month (interview in May). She'll come and live with us, and help with Ana, so I can finally go and get a job (yeah, wish me luck with that, with the season being over in South Florida). I really look forward to her coming here.

Follow-up on the appointments

2010-04-08T11:27:00.000-07:00

Physiatrist: we saw a new doc, I've been trying to get an appointment with her forever, but the waiting list was 4-5 months. She is a medical director of the Early Development Center at Memorial Regional and evidently, quite popular. A very nice lady. Gave us a script for AFOs and night splints, poor Ana, she'll be in orthotics all the time now. She advised us to see an orthopedic surgeon, for hips and spine, to do a baseline X-ray of both.

Ophtalmologist: He thinks Ana prefers to use left eye over her right, which might eventually lead to decreased vision in right eye. So he highly suggested eye patching. I bought patches, but I doubt Ana will tolerate something like that. She hates it when I even wipe her mouth.

MDA clinic app was rescheduled for May, both doctors are on vacation.

I'm tired today.

Until next time...

Appointments, appointments, and then some more

2010-04-05T20:44:00.001-07:00

We're seeing a physiatrist on Wednesday, ophthalmologist on Thursday, follow-up at MDA clinic next Monday, peds (for one of her 18-month shot) sometimes next week. Picking up AFOs in about 2 weeks, too. Dentist on 19th. All referrals ready and waiting on my desk. What a bliss.

ER, stander, etc...

2010-03-31T09:44:00.000-07:00

Ana is sick. We ended up in the ER Sunday night, around 2am. Shortness of breath and she cried her heart out. She was given a nebulizer treatment and a steroid shot. She was discharged around 6am, and felt much better. They told us to use nebulizer treatment at home as needed. Yesterday she felt so much better, but today she has a cough. We saw her pulmo today and he said to continue with the nebulizer every 6 hrs. Her lungs are clear, no wheezing, no fever either. I hope she gets over this quickly. She's quite miserable and cranky.

On a good note, we're getting a stander for Ana. This one . It has a tray, a head support and a lateral trunk support. A mom from the forums that I visit will give it to us for free. Isn't that awesome?!?! I will just pay for the shipping. THANKS Margo !!!

Ana's PT gave us a Pony gait trainer to try it over the weekend. Since Ana didn't feel quite well, I have only put her twice in it. When we use it at therapy, she cries during the whole time, but at home, she was perfectly content:

We'll try to get one through insurance. I'm not sure if it'll be this model exactly. Have to decide with PT.

Also, Ana was fitted for new AFOs. We should be getting them in about 2-3 weeks. I have chosen a butterfly design, it's really cool.

Until next time...

Sort of an update

2010-03-24T11:51:00.000-07:00

Just wanted to kind of update what's going on... Nothing interesting in fact :).

We received a suction machine yesterday, to go along with the Cough-Assist. Still waiting for pulse oximeter. Go figure, the cheapest device takes the longest to get approved.

Ana had an excellent OT session yesterday. She sat in a small chair (with special tomato liner) (and with support from OT) at a table and played with blocks and other toys. She had a proud "I'm a big girl now" look on her face. I was going to buy a chair a table for her room, but kept postponing it since she can't really sit by herself, but now I'm thinking of maybe getting them and a special tomato liner, too. It's not that expensive, about $180.

We're talking with her PT about getting her a stander. We'll try one out on Friday and I'm trying to get some info from moms on the forums (most of them are very knowledgeable re equipment). We also talked about getting a gait trainer, too, but the stander is a priority. It'll be a long-term battle with the insurance, but oh well, what hasn't been. If it wasn't for insurance, my days would be boring.

Oh, forgot to mention... we'll be going to Montreal in June, to visit friends and we'll also go to Formula 1. My husband is a big fan, I could care less. I will also meet a former coworker and a dear friend (who now lives in Toronto) there. It should be fun. Can't wait.

Until next time...

Back to therapy

2010-03-16T16:03:00.000-07:00

We are back to therapy after waiting 2 weeks for authorization (continuation of) from the insurance. I really cannot understand why it took them 2 weeks to re-authorize services. And that is, we're still waiting for speech.

I'm trying to find aquatic therapy and see if it would work for Ana. She loves the water and we take her to our pool whenever the weather permits.

I'm not really in a writing mood today, it's rainy, gloomy and humid outside.

Until next time.

Sleep study

2010-03-15T19:52:00.000-07:00

I haven't had a chance to post... Ana had her sleep study done last Thursday. It went better than expected. She cried while the technician (who, BTW, was a really nice lady) was putting all those wires to her head and body, but after she slept just fine. She woke up only twice, for shorter than 2-3 minutes. We don't have the results yet, but hopefully next week.

This pretty much completes our round of tests of any kind. And honestly, she needs a break from testing. As a compensation, we do have some upcoming specialist appointments. It seems it never ends, does it?

Cough Assist

2010-03-05T09:04:00.000-08:00

"Cough Assist is a device that helps removing secretions in people with an ineffective ability to cough"

Ana's pulmo ordered it for her last December. Insurance finally approved it and we're going to his office on 3/16 so that he can show us how to use it. Ana hasn't really had a need for one yet, and I REALLY hope it stays that way. I hate the idea of having a lot of medical equipment at home, but, it is what it is.

I CANNOT deal with insurance companies anymore

2010-03-03T12:00:00.001-08:00

Seriously! I need to hire someone full-time to do this for me.

(shortened versions)

Situation 1: Speech therapy for October is not paid. Speech therapy for November is paid. Why? No one knows.

Part 1:
Ins: It's not a covered benefit.
Me: Well, how come in November it is?
Silence.
Ins: Oh, they used a wrong code.
Me: Well, what the code they should've used?
Ins: Oh, we can't tell you that. You need to call the provider.
Me: Can you call them and tell them wha tthe code is?
Ins: No, we don't call providers, they need to call us.

Part 2:
Provider: We don't change codes to our claims.
Me: Then, how is this claim gonna be paid?
Provider: Your insurance should contact us.
Me: THey told me they didn't call providers. You should call them.
Provider: No, we don't call ins. companies.
Me: (IN MYSELF) Then How the hell do you communicate between each other?
(LOUD) Ok then, can you stay on the line and I'll conference you in with the ins.
Provider: Sure.

One hour later we (i.e. they) came up to an agreement that the provider will resubmit the claim with the correct code. Why the hell did they use a different code in October and a different in November?

Situation 2: I receive a bill for Ana's chest X-ray. I call the provider.

Provider: It's not a covered benefit.
Me: It sure is. I have an authorization number for it.
Provider: The insurance denied it.

I call the insurance. Luckily, I got a very nice lady in customer service. I emailed her the bill and it turned out the provider has used a wrong (old) ID for Ana (Hello, why did you ask for insurance card when we were there?), so they will resubmit and it will be paid.

Situation 3: In short, my husband was on the phone with Humana every single day for 6 months because they had denied claims for PT and OT (previously authorizing them). Explanation(s): wrong code, it's not a covered benefit, it is a covered benefit but don't know why it's denied, the provider is not in the network, etc... I cannot remember what other things they have came up with. At the end, they paid.

But how is it my job to settle these issues? Do I not have enough things to do? Sometimes I feel my ear is stuck on the cell phone for hours, dealing with scheduling appointments, canceling appointments, asking about claims, authorizations etc. And not to mention, we have not even started with any medical equipment. When we do, it will be fun.

Me, the frustrated mother.

Yellow, blue

2010-02-19T10:34:00.000-08:00

Something really nice happened yesterday. While at OT, Ana was playing with a ring stack, and I said "yellow", since she was trying to get the yellow ring out, and she looked at me and said "uuulooou" or something of that sort. :) Then I said "blue", and she said "uuuuu". It was a fantastic moment, at least for me and her therapist. She makes sounds when we talk to her, but not really imitating what we say to her, but her own sounds, so this was surely a try to imitate.

The little things that make our heart melt and keep us going.

Our trip to Cincinnati

2010-02-16T11:38:00.000-08:00

So we're back. We flew to Cincinnati on Sunday morning, checked in Ronald McDonald's House. I was quite amazed with it in fact. I have never been in one, so wasn't really sure what to expect. Our experience was great.

Monday morning we went to Cincinnati Children's Hospital and met with the investigator doing the clinical study for merosin-deficient CMD. We talked a bit, he examined Ana, explained a few things that we asked and then we went to the lab so they could get some blood and urine sample from her. It went (kind of ) smooth.

Ana was cranky most of the time. She has actually been quite cranky ever since she got sick, and a little before that. Don't know what's up with this kid. I'm not sure if something is bothering her or if she's just being like that for no reason. Every time I even think of leaving her alone in the room, she starts screaming.

Until next time...

Stomach bug

2010-02-10T20:24:00.000-08:00

So.. there was a reason for Ana being cranky... she got a stomach virus. And so did my husband and I. And my best friend. It's like a quarantine in our home.

I am the least affected, and all of them feel better now. Ana stopped vomiting, but she still doesn't eat much, well, almost nothing. Luckily I'm still nursing, so we were able to put something in her. She doesn't want to get near a Pedialite or Gatorade. She only drinks water.

We went to her ped twice already, and her labs were fine, she wasn't dehydrated. I just call the peds office again to see what I need to do. Maybe I'll take her to the hospital and have her on IV fluids for some time. I hate going to the hospital, but if it makes her feel better, surely so.

Not to mention that her night sleep is a mess now. She wakes up every hour. It's very difficult for her to fall asleep too, we spend more time getting her to fall asleep than her actual sleep time.

Until next time..

Crankiness

2010-02-04T13:30:00.000-08:00

Ok, so there is a word "crankiness", I checked in the dictionary. Wasn't sure.

Well, this word describes Ana's day today, so far. She's napping now, so hopefully she wakes up in a better mood. I'm rather sure it is due to lack of deep sleep last night (she woke up many times), but who knows. Might be teething. Or just boredom in general.

I'm trying to make her days as filled out with fun as possible, doing therapy stuff meanwhile. Most of the days it works out fine. Not today.

I feel very tired. Taking care of her exhausts me. She needs constant attention. I could really use some help around. I hope the process for my mom's Green Card goes quicker. It's very slow for now :(.

I was thinking of maybe putting her in daycare, part-time. And then maybe I can find a PT job, too. But then, with all the therapies she's getting, I'm not sure how to manage all that.

Oh well, I feel cranky, too. Hopefully this day turns out to be better later on.

Until next time...

Neck ring

2010-01-30T19:28:00.000-08:00

Today we used the neck ring in our pool. We got it from www.waterwaybabies.com

Ana really liked it and was very happy in the water. I didn't take photos, but I will take some tomorrow. I'm so glad that she liked it.

Its OK not to be fine sometimes...

2010-01-27T18:45:00.000-08:00

... and today, I am not fine.

Annoynig PC virus

2010-01-17T16:29:00.000-08:00

I caught a virus (or trojan or whatever they call them) and I spent almost all day yesterday and today cleaning my PC. No, I don't go to porn sites, I got it from a recipe site. I was looking for an apple strudel recipe. Annoying. I'm not very computer savvy, but not totally ignorant either, but this totally sucked up my energy. It looks like everything is back to normal now.

Good morning

2010-01-14T06:38:00.000-08:00

Ana didn't sleep well during the night. So, I'm sleepy, with a headache, and I think I'm coming down with a cold. Everything aches.

On a good note.. I have made arrangements to take Ana to Cincinnati Children's for a clinical trial for Ana's type of CMD (merosin deficient). They are looking for biomarkers in blood and urine samples of individuals with MDC1A.

I called their Guest Services and they have arranged accommodation and transport for us. Very nice.

Here is a recent photo of Ana in her Special Tomato chair playing with blocks.

Until next time

Swallow study

2010-01-11T11:27:00.000-08:00

We just got back from Ana's swallow study. No aspiration, Yoo-hoo. She was very cranky while waiting and during the study itself (which took about 2 minutes) because she was hungry and sleepy. But it's over now. She also had a chest X-ray done, as a baseline for the future, as per her pulmonologist. Her pulmo is one of the nicest doctors that we've seen, and trust me, we've seen many.

We have also scheduled a sleep study, sometimes in mid February (I have to check my calendar for the exact date). We'll see what that shows.

Until next time.

Winter in Florida

2010-01-05T11:52:00.000-08:00

I guess this is as cold as it gets down here. In the 50s during day, 30s at night. It is nice for a change, it's been sizzling hot for months.

We have moved into our new apartment. Much more space, that we didn't have trouble filling in :). Still some boxes to be unpacked.

Ana didn't mind the change much. She handled it quite well in fact. She started sleeping through the night (not sure if the chillier weather has anything to do with it).

Until next time.

It ended with a bang

2009-12-31T14:01:00.000-08:00

Yes, 2009 ended with a bang... for Ana. She did so beautifully in PT today, they worked on side sitting most of the time, and she did marvelous! She was also reaching in that position. Her PT was so thrilled, finally her hard work of almost a year yielded some (visible) results. It seemed (for months) that no progress is made. Yay, Yay.

We're moving today into our new apartment. I'm at my friend's house with Ana, waiting for everything to be unloaded, and then we go and start unpacking. I can't tell which is worse... packing or unpacking. And I'm awfully tired, but excited to move into the new place. So, you guess what we'll be doing tonight, for New Year's Eve. Yes, unpacking!

Clap on

2009-12-28T09:09:00.000-08:00

Today, I have noticed that Ana completely opens her little hands when we clap her hands. She hasn't done it before, one of her hands (the right one, precisely) was always fisted and there was a little clench in her left one, too.

I came across this neck ring the other day www.waterwaybabies.com and I'll order one for Ana. I won't buy the little pool, cause we have a pool in the building that's heated during winter, so we can practically use it any time of the year.

We're moving into our new apartment on Dec 31st, I bet it'll be fun. I have only ONE box packed :).

Until next time...

A long overdue update

2009-12-26T10:20:00.000-08:00

I haven't been writing much lately. We bought a new apartment and busy with some minor remodeling. Hopefully we'll move in around Jan 1.

We saw a pulmo and waiting for ins. authorization for a swallow study and a sleep study. Not looking forward to either of them.

We also saw an ophtamologist (3 month checkup) and he suspects decreased vision in Ana's right eye. So he wants us to start patching her left eye for 4 hrs/day. I personally think there's nothing wrong (the morning we went to see him was after a very rough, sleepless night for Ana so I think that played a role too. We'll see).

I also took her to an MDA clinic, just to get her established there. All specialists that we saw there were very nice to us and offered lots of support. So that was a nice experience.

Ana is doing well, in her own way. She is really getting good at sitting, with little support on her waist, which is a HUGE thing for her. Also, she started intaracting with other kids her age, playing with toys (with my help of course), but this is also HUGE. Before, she just wasn't interested in other kids.

On the downside, she screams every time I leave the room. I understand it's because she can't really do anything by herself and needs me, but it's unbearable at times. I DO need to use the bathroom every now and then :)

So that's pretty much it. Not too much excitement.

Send a Christmas card

2009-11-08T22:09:00.001-08:00

Grant a special wish to a special little boy...

I just learned about a 5 year old boy named Noah Biorkman who is in the last stages of a 2 year battle with Neuroblastoma Cancer. His family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards.

Please, let's make this little warrior's wish come true!

Send cards to:

Noah Biorkman
1141 Fountain View Circle
South Lyon, Mi 48178

Lets see how many cards
we can get together for this brave little boy.
Thank You and God Bless.

(Please consider posting this very urgent message to your blogs)

Feeling better

2009-11-06T13:19:00.000-08:00

Ana had a cold, it all kind of started after she had the flu shot. First mild fever, then she started coughing, and some fever. I took her to a doctor and they gave us antibiotics. She's feeling so much better now. And her appetite is back. She wouldn't eat anything for 2 days and could hardly sleep from being congested.

I'm in no mood of writing these days. Well, practically I was unable to, being so busy with Ana, since she needed constant care. Most of the time I would let her sleep in my arms because I was afraid if I put her in her crib she would start coughing and wake up too soon.

Ana's taking a nap and I've been surfing (for nothing in particular really) for two hours now. Well, I'll keep on surfing. Until next time.

Shots ... > ... Fever

2009-10-30T13:21:00.000-07:00

Ana woke up with a fever at 3am. It wasn't bad (37.7C) but it was her first ever. We gave her Tylenol and she got back to sleep at around 4am. It was gone this morning and we went to ST and PT. Both went pretty well. Since we started ST Ana's doing more with her mouth. She sort of blows raspberries (in her own way) and says ghe-ghe-ghe very often.

She doesn't have much appetite today, but drinks a lot of water in exchange. Of course I try to stuff her mouth as much as I can with whatever food she shows interest into :)

We'll be staying home for the weekend. Not sure if I'll dress up Ana for Halloween. I haven't bought a costume yet, but it's so freaking hot here, and all the costumes I've liked are made for colder weather. Ugh, where is that chillier weather?

Fed up with waiting at doctor's appts.

2009-10-29T09:24:00.000-07:00

We waited 2 hrs before we were seen by Ana's pediatrician. I don't understand.. what's the purpose of making an appointment? I am so aggravated. I can't keep Ana entertained for 2 hrs in the waiting room.

She got 3 shots today, including the flu shot. I didn't want her to take the flu shot, but the doctor convinced me (or sort of, I was too exhausted to debate and of course she was in a rush).

We will miss OT today. Ana is asleep and I don't want to wake her up again, since I woke her up early today for her morning doctor's appt.

We might be able to see her neuro after all (although he doesn't take her new ins). I was gonna find another one, but his office told me that we can try obtaining a referral for him, it usually works. I would hate to switch. We like him very much.

On another note, it's freaking 90F here. and it's October 29th. Unbelievable.

The Star Spangled Banner

2009-10-27T13:04:00.001-07:00

Tomorrow, I go to the immigration center to take the oath, get my naturalization certificate and to sing The Star Spangled Banner. That means I have been in the US for 5 years now. Wow, time flies. It seems that it was just yesterday that we moved here.

We went to Naples for the weekend. We have very good friends there, their son is just a month older than Ana. It was a nice weekend. We also went to the Naples Zoo. I'll post photos later tonight.

Ana is taking a nap. She had occupational therapy this morning and it went well. She was sitting for a long time. Tuesdays at therapy got crowded though. Today, there were 4 kids in the room, and one of them was screaming during the whole time. And not that they were doing something physical with her. She walks and runs and everything... she was playing with a ball with her OT and was screaming (like angry scream/cry) from the top of her lungs. Ana cries/screams often too, but that's because she's straining herself into physical activity, and I don't blame her (well, I do sometimes, since she was the loudest kid there). Now, it's this other girl who's the loudest. There goes away our trophy.

Here are some photos from our Naples trip:

Ana & Philip watching "Your Baby Can Read".

Ana leaned over Philip and he ran away :))) Run for your life :)

Playground fun

Diagnosis

2009-10-20T13:10:00.001-07:00

So, we heard back from Univ. of Minnesota, where some tests were done for Ana.

Dx is: merosin deficient congenital muscular dystrophy.

Do I feel relieved for finally having a dx? Yes and no. I have mixed feelings. It's beyond my comprehension. The incidence in 1/76,000. How did we get so lucky? Why?

..............................

Ana is doing so well in therapy. She is not fussy as she used to be. She actually smiles during the therapy (well, not all the time). That is huge.

We loaned a Special Tomato chair from our PT. Here's Ana in it.

Cuban coffee anyone?

2009-10-10T21:41:00.000-07:00

I'm not a big coffee drinker. However, I had one (Cuban coffee, with a bit of milk and ice) today at around 8pm. I had a headache and thought it'd help. Well, it did help, but now my eyes are wide open and it's almost 1am. Maybe I'll work more on my template :)

Ana went to bed late, she was awake until 11:30pm. Lately she takes a nap around 7 pm, and then she stays awake till 11pm or midnight. She wakes up 1-2 times during the night. Hm, I must do something about her sleeping/napping schedule, just not sure what.

Well, I'll go and count sheep in my bed.

Good night.

Where is that colder weather?

2009-10-09T15:48:00.000-07:00

It's October, and it's just about 90F. Yup, you gotta love South Florida. Ana and I went to the mall today, it's impossible to take a walk outside. We spent about 2 hours there. She's taking a nap now, hopefully she'll sleep more than 30 min :).

I still cannot decide which blog template to use. I keep changing them, and there are several that I really like. We didn't have therapy this week, we are waiting for authorization from the insurance (we switched). Hopefully they'll send one on Monday. If not, they'll be getting a call from me. One thing I learned dealing with ins. companies, you gotta keep harassing them. Otherwise, nothing will be done.

We're having Domino's pizza for dinner. My husband will pick it up on his way home, I just ordered it online. How convenient :)

To begin with

2009-10-08T15:12:00.000-07:00

I'm not sure what to begin with. I wanted to create a blog about Ana a long time ago, as it's the easiest way to keep track of all events going on with us. I have a couple of blogs that I follow (almost on daily basis) and it kind of inspired me to start one.

So, this will be all about Ana, my daughter, who is 15 months now, and very delayed. I will not use the word disabled, for now, since it scares me. Here's Ana with Mouse family:

We do not have a diagnosis yet... She has some sort of brain injury (although one specialist that we saw thinks it's not an injury per se, but something else) and maybe some type of muscular dystrophy... But nothing is sure yet. We spend our time going to therapies, physical, occupational, speech. Doctor's appointments in between: neuro, ophtamologist, cardiologist, physiatrist. Did I forget someone? If I did, I'll mention them in my next posts... oh yes, we're seeing a geneticist next week.

I'm a SAHM. Well, I do some freelance translation work from home, but lately it's been so scarce that I keep forgetting I actully do something else besides researching child development and parenting. LOL. My husband is a vet tech.

Well, good for a start. Until next time.