May 31, 2011

14 Months!!

Almost 14 months 1.5 week! Yes, I am becoming a blog slacker! I typed it all up 1 week late and then kept waiting to format it a little bit (its too long....). Here goes...

The twins are on a roll! They are constantly walking or running. I am trying to remember how they crawled... they will be on their all fours only if they are trying to reach out to something while they are sitting, otherwise they are my two big little babies! ;)

Highlights for this month:

-RM will try to act out Twinkle-Twinkle, Itsy Bitsy Spider, Six Little Ducks! Of course he doesn't get the whole things, but it's fun to watch him identify the song and then act differently at each of them. RT does it too, but has not been as animated as RM.

-RM says something like quack-quack (more like qock-qock). It took me a couple of times to positively identify that he indeed is repeating me or saying it when he sees a duck (along with signing it). They both raise one hand up to show how an elephant raises its trunk and say "uuuuuuh", they show how birds fly (flapping both arms), RT goes "ooo ooo ooo aah aah" for how Monkey calls out (RM tries but its a hit or miss).

-RM & RT both try to say "water" when I give them their "sippy"... well, RM still doesn't really like his sippy. I have to open it up and he drinks it like he is drinking from a cup/glass like a big-big boy! He hates the spout, he will drink up to 1-2 ounce of water without stopping. One less thing I have to worry about weaning him off of. But, it is just inconvenient, because I have to hold it for him (so that he doesnt choke with too much of it going down the wrong way) and guard him from his sis, so that she doesn't attack and the water is all over his face! Plus, he can't drink on the go (car etc). RM and RT consume close to 5-8 oz water through the day.

-They are down to 20-24 oz milk in a day (4 times) - much better than 2 months ago. We don't really give them any juices, though they will once in a while sip on it if offered (RT likes grape and orange juice, RM likes watermelon and orange juice).

-They both are teething big time. RM is getting his lower right front tooth and canine, with upper right canine and molar, and lower left molar (13 total). RT is sprouting out her upper and lower molars (12 total). They both have been pretty fussy lately due to the pain.

-RT is completely off her reflux meds for the past 2 weeks (last day 05/22) and she seems to be doing fine!! We reduced RM's medication to just half a dose yesterday.

-RT climbs on the couch/(lowered) bed un-assisted. RM does it occasionally, but hasn't still mastered it.

-They both love bubbles, swings, slides...! When outside, they will try to follow older kids and play with them. They try to go up & down slopes... fall down, crawl up, get up, roll down - its hilarious! :)

-RT tries to blow her own nose - funny! ;)

-RM can identify his own nose, hair, teeth, tummy (and sometimes will point out mine too). RT can identify her own nose, hair, teeth, tummy, belly button, hand and will point out mine too. She can identify moles - she pretends that they are food items and tries to feed those to me! :P

-Our Boston trip (2 weeks ago) - to say the least was hectic (as expected). We went for a graduation, which was successful, but we didn't end up doing any touristy stuff at all.

-They both are loving their swim lessons. We also got a baby pool and water table (for them to play in our backyard)... do I need to say they are loving it!?

-They both understand and follow instructions very well (and sometimes do things on their own). A few of them:
*they will start heading towards the stairs if tell them its bath time... once they are up, they will head towards their bathroom (and sometimes try to climb in to the tub);
*they will bring us our phones if asked to; they will run to our home phone to bring it to us (if it rings);
*if asked to give a (friend's) babies sippy, they will try to hand it over to the baby;
*they will head towards the high chair if I tell them its food time;
*they will put their fingers in their mouth when I tell them its teeth brushing time. Brushing RT's teeth is the most un-productive task I do in my entire day - she hates it! On the other hand RM loooves it;
*they both shut our safety gates on their own;
*they will bring over their clothes to wear if we are leaving the house;
*they know where shoes and socks go (on their little feet) and will try to say what it is (call it "shaaj");
*I normally have a few balls and toys in our stroller - RT will pick those out and put them back in place after she is done.

-They know how to throw a tantrum when told "no" or they don't get what they want. :)
-With all their activities, all those fat roles are starting to disappear... their thighs are getting skinnier - I will miss those curves, but it's all good! :D

Memorial Day weekend was a staycation for us. But, we went to a small local zoo last weekend. They loved the birds and the penguins, farm petting area etc. Most animals were taking their afternoon nap unfortunately and were not very active. No activity = lack of interest for 1 year olds. We had a great time nevertheless.
We are going for strawberry picking coming weekend and a BBQ at the park the following weekend. Their Uncle is coming today and staying with us for 10 days. He is pretty cool - so it will be some fun times. So June's going to be busy for us!!

May 17, 2011

Blank

I couldn't figure out what to label this post. This post is a bunch of mixed feelings. It is a sigh of relief that RM's life has not been labelled with NF. But, who knows what the future holds? NF can sometimes show significant indicators along puberty, so this might just remain a big question mark for a while. As per some ("scientific info"), NF can be just a label, and not affect a person at all (other than some markings on the body), but for some - it can be life altering. Or, this could just be some discoloration and not be NF at all. I can only hope that he will do fine. He will be as normal as normal can be.

It is unfair to compare, but often I do just that. Genetically/biologically girls are wired to be ahead of boys during their early years. RT started balancing, crawling, walking, self feeding, repeating words, understanding instructions etc before RM. I wonder if RM is behind his sister just because he is a male? Or is NF causing him to be slower? Am I thinking too much? Comparison is not right, but keeping track of his progress is important, and I have a scale right in front of my eyes. RM has pretty much followed his sister (at the most) in a months time in whatever skills he picks up... so it is not like he is lacking behind, and when I actually compare him with other boys and with what the pediatrician wants him to do, he seems to be right on track.

Some times I feel I am thinking too much about him and too little about his sister. I feel like may be I am being biased. Some things can go unnoticed... am I ignoring something obvious about my daughter, because I am too concerned about - apnea, cardio, more severe reflux, undescended testicle, NF for my son?

I am a kind of a person who likes to know all (?) my options and be relatively proactive. Such issues (besides IF) are a smack on my face, because they are totally out of my control. All I can do is to try to have patience and be aware.

May 16, 2011

RM Update

The doctor called back (actually a week ago)... and the x-ray looked normal! Yay! RM doesn't need to see any ortho and neither is it a positive indicator for NF. Breath-in-breath-out!

May 8, 2011

Happy M Day!

Happy Mother's Day to all you wonderful Mommies and Mommies in the making!


May 7, 2011

Enjoy Him...

...is what the doctor said, and my eyes swelled up with tears!

That, is the short version!

We had our appointment (for RM) with the neurogeneticist on Friday (May 6th) (for more details, see previous post here). Of course I went back to Dr. Google this last week and went over whatever I could lay my hands on about neurofibromatosis (NF). At the appointment RM was not "diagnosed" with NF1 (this would be NF1 and not NF2). You need two of the several features to exist, for a diagnosis to be made. RM has several spots (café au lait spots?) on his body, some of which are distinctly visible and some of which you will notice only when you hold him down and scan through his body. In general, when you look at him, nothing looks abnormal. Ever since I heard about NF, I have been (discretely) scanning other kids to see if they have any such spots/discoloration, and honestly... quite a few kids have them! Even RT has some spots on her.

I had more questions than what the doctor intended to discuss with us or give information to us about. Some of the things we discussed (about NF1) are as follows:




*80% of people affected with NF1 will live a "normal" life.
*There is a chance of learning disability, so it is important to be vigilant about his grasping power and (relative) milestones. At this juncture he is right on mark developmentally and we do not need to seek any therapy.
*We have to schedule an eye check up for him. NF1 kids can have issues with the eyes.
*RM has a slight curvature to his tibia (bone in the calf - visible only if I point it out to you). Our Ped had attributed it to his positioning in the womb. However, NF1 can cause weakness in bones and sometimes curvature in bones in the leg or spine. So, an x-ray was taken and we are supposed to be hearing from the doctor on Monday. If there is any issue with the x-ray we might be directed to an orthopedic. Sometimes such situation can make bones more prone to fracturing. Also, depending upon the situation, this could signify NF1 (remember, (above) you need 2 things to positively identify NF1?).
*NF1 can cause benign (and very rarely cancerous) tumors, they can be surgically removed but are often left as is (unless it causes any physical or cosmetic pain).
*We discussed his reflux, apnea, cardio (congenital heart defect - can be a concern for NF), IVF (I asked if there are any studies relating IVF to NF - answer was "no")... and nothing seemed concerning to the doctor. She (doctor) noted his birth weight and height. He currently weighs 25 lbs and is 30.5 inches long (at ~ 13.5 months).
*NF1 people can have big heads. She measured his head again (since it is in the 90+ %ile). Then she measured RT, Daddy and my head as well. We all fall in 90+ % (I am actually off the chart - 100+), and she thinks its a genetic thingy!
*She marked and measured all the spots for her record, assessed his joints, muscle strength, walking etc.
*Before my IVF cycle, I had met up with a genetic counselor about epilepsy (it runs in our family - see post here). From what I have read, NF1 could cause seizures... the doctor however, does not think there is a "high" correlation between epilepsy and NF1.
*As mentioned before (previous post), RM has a big spot on his right thigh - she said it was a mole (birth mark) since it was very dark. I also mentioned to her that I used to feel like quite a few spots on his body were new, but in fact I found many of those in pictures that were taken in the early months (after birth). Skin color changes over time and with growth the spots can expand, as a result they are more prominently seen (now) than they were before.
*He will be assessed annually to see if there are any changes in the spots. The size of some of the spots can increase proportionately with growth. Some new spots can pop up too.

One of the last questions I asked was - what do we need to look out for (new spots etc) and she said ENJOY HIM!! I-Wanted-To-Cry! And I am almost in tears as I type this up again. The doctor said, unless there is any drastic change in him, we should not worry.






He is a beautiful-strong-child. RM and RT are my precious miracles. I have Faith, and I will fight for them!!

May 4, 2011

Pregnant Flash Mob for the March of Dimes



It is when I see such things, is when I wish I could have enjoyed my pregnancy than constantly freaking out! Oh well, I have two cutie pies with me now - so it is all well! :)

Suggestions for Summer Toys & Boston?

Any suggestions for summer (outdoor toys)? I am thinking of buying a baby pool and one of those sand/water tables (see Step2 WaterWheel Activity Table).




Also, we will be going to Boston for a graduation (in 2 weeks time). Any kid friendly places you have been to that can be covered in a day?




Thanks in advance for your comments!

May 2, 2011

May 6th is coming!

13th month update is still sitting on the edit list. I can't believe I am so far behind... I have been smack on time posting their monthly update (however crude those posts might be)... but this time, I am yet to complete it! I guess being on my own is taking some getting used to.


The biggest thing on my mind is Friday, May 6th. 3 months have already passed and we will be headed for RM's genetic consultation for Neurofibromatosis (NF). I don't know what future holds, and I hope it is the best that it can be. But, for now... he is such a lively - strong - smart little child. A few spots on his body should not stop him and those spots need to be just spots and nothing more. I am numb right now... not thinking much of what it can be. As friday approaches, I don't know what state I might be in. Please send us some prayers!

May 1, 2011

Yay!

So much to say, so little time. It's my birthday today! 2 years ago I had a BFN the eve of my birthday! Here I am celebrating 1 year, 1 month and 5 days of our darlings!

In short, my Mom went back and I am handling everything alone. It ain't bad at all... and in fact I am enjoying doing it all by myself. The kids miss her... but we are venturing out a lot (weather!!), so they are having a good time too.

Will post more soon!