“I would have loved you longer”

Dear Avy,

My love, my peace keeper , I just love you so much. I want to re -start your blog this year and hopefully keep it up.

You have come so far since my last post. Let us just do a quick update.  The baked milk challenge was a success. In September 2012 we did a regular milk challenge for you with ice cream and you did really well. So now you  can have any milk products which is heated, in baked goods, cheese etc without any issues. You do not like regular milk and it gives you tummy aches. We also welcomed our second baby, your baby  (Amik is the name you gave him) baby boy Atiksh, in August 2012. He has his own blog here http://ourcdhherolittlea.wordpress.com/. So his birth has kept us busy for so long. Then we moved on to baked egg trial for you and now you is able to tolerate well heated eggs, like in pancakes and cakes.

We also started a weekly allergy shot regimen for his season allergies. They were getting so bad that this was the best decision for you. We were told that doing it between the ages of 5 and 6 might mitigate your risk for developing asthma. It was a very tough decision, but to see you cough and suffer after running outside for 30 minutes, we felt this was the right way. Best decisions are never the easiest ones.

So you get two shots, one in each arm, every week for about 6-8 months. Then it becomes every 2 weeks etc. We started in September of 2013. You cried the first 2-3 weeks, but then it does not seem to faze you ever. You walk in there all cheerful, my heart breaks to see them poking you, you don’t even shed a tear and you walk out as though nothing happened. So much poise for a 5 year old and so much strength and bravery for such a little man. I hope it helps you.

You also had a major milestone in 2013- you started kindergarten. Yayyy. You seems to be loving your school , your new teacher and your new friends. You do miss your best friend B, but you get to see him every day, as B’s mom is picking you up from school every day.  You have bloomed so much and become more confident since school started. You used to be so shy of your accomplishments, but now I see a glimmer of pride in there. You were the only kid to be able to read in your class and I will never forget the proud look on your face when you told me that. Keep shining my little star.

You also have a companion now. Your little brother. You adore him so much. You are so nice to him. You call him your baby. Both of your laughter fills the house with joy, and Atiksh’s new trick is to push you around the house, saying “dho, dho” , like you are a push toy. You get very upset if I correct him, and you want me to watch in silence as he bites you L. Please let me correct him.

You are also his teacher, I see you reading books to him, showing him the colors, shapes and letters and he follows you around the house, wanting more. I wish both of you stay the same way forever.

You do have your moments of whininess, tantrums and sadness. You have moments when you are unable to share me and Appa, and you just fall apart when Atiksh needs the attention and I hope that it gets better. I hate to see you upset and sad. Please remember like I always tell you, “I love you and Atiksh the same amount, but I have loved you longer, will have always loved you longer”. Hugs.

You also are a little philosopher. This year we have had so many conversations about life and everything else and it is an absolute joy, though at times I would like 5 minutes without any questions. I can see your head is filled with so many of them.

You also have a love for Math. I guess it was programmed into you. It is amazing to see you learn and do something which both Appa and I love. I am so glad that you want me to teach you and you listen. Stay that way.

Having two kids is tough, but you have made it so much easier for us. Your words, laughs, hugs, fights, judgments, kisses, games and patience have made us better people. Thank you so much for that. Shine on my love. Hope 2014 will be a much happier year for you, my brave knight.

Love

Amma

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Dreams…

Dreams do come true…

The day has come…Avy can now tolerate milk baked at high temperatures!!!!

Last Thursday we did our first baked milk challenge and it was a success. One of the most happiest day of my life…of this year which has otherwise been a mess.

Seeing him take his first bite was nerve racking….the fact that he rubbed his eyes immediately..made my heart and hope sink….we wiped it with a wet towel…it became alright (seasonal allergies)…

A small bite every 30 minutes…the first 30 minutes was the worst…the remaining three hours were nothing but joyful and tear- filled…

A gleam of hope has appeared…and I sit dreaming of the day I can take him to the ice cream store and buy him everything that he wants…

I sit dreaming of the day he doesn’t have to be the only kid in class who does not have a cake and has to eat chips instead…

I sit dreaming of the day when I don’t have to dread every time day care calls, hoping it is not because they had a accidental exposure…

I sit dreaming of the day I don’t have to explain to a three year old why he can’t have most of his Halloween candy…

I sit dreaming of the day when my son feels normal…

I dream…

Love is…

Parental love is a different kind. It is a love that would make us give up our most favorite thing in the world for our kids.The love is so pure that makes you give up doing what you love just so that the person you love can do it.

Ajit narrated this beautiful incident to me which proves that this kind of love exists at any age.

A little back story, as the star of this narration is  Elmo. I am sure you all know who Elmo is. He has been Avy’s favorite for as long as I can remember.  He has an Elmo shaggy toy that he keeps on his bed and sleeps with. During certain conversations about relationships like father, mother, son etc, Avy was always curious on where his “son” was. He once told us “Avy has no son becowse he has no wife”.:)

A few days back he decided that Elmo is his “son”.  He would hug him, kiss him, play with him like we play with Avy, sleep next to him, read to him etc. So, couple of days ago, Elmo went to daycare with Avy.

Avy loves picking the mail from the mail box everyday. During the weekend he will make multiple trips to check on the mail and would be crushed if we ever touched removed it from the mailbox. As is his usual routine, when he gets back from daycare, he walks to pick up the mail. But he let his “son” pick it up as it is so much fun.

There, that love, truly comes at any age. The love that makes you give up anything you love doing so that the person you love can.

PRECIOUS!

p.s Just a pic of him fitting a tail for Eeyore!!!

Things that make me smile

Some of my happy memories from the last couple of months recapped for today. Memories that bring an instant smile to me face.

Secret behind the tooth

During my surgery time P had come with her son T to help us out. T is 6 years old. While he was at home he lost a tooth, not his first, but the first one Avy saw. To say the least, Avy was shocked. The sheer possibility of losing his teeth scared him more than we had realized.

He asked us, why t had lost his teeth. Just to have some fun we said, it was because he ate too much sweet that his teeth started to fall off. Little did we know what we did then would have such a profound impact.

For the past two months, barely a day goes by, without Avy asking if his teeth are going to fall off. He would take a cookie, come back for another, but ever so cautiously ask me, if his teeth would fall off if he had another cookie :)

My favorite moment was when; we had given him some ice-cream. He came into the kitchen, and I was in a jubilant mood and said “Avy would you like some more?”. His face was aghast. He shouted “Nooooooo, my teeth will fall off”. He then dropped his bowl in the sink and walked away :)

Oh what we do to little one as parents. He still always checks before he has more, and brushes his teeth twice a day with no effort. So maybe it was not too bad to scare him a little, huh?

Best friend

Couple of weeks ago we had gone to a street fair type thing in the place we live. They have live music, food stalls, arts and crafts, tattoos, big bouncy houses for kids etc. Our plan was to enjoy the food, let Avy in the bouncy houses and just enjoy the slow evening. But things turned out different in a moment.

While we were seated and enjoying our potatoes, I hear a small voice calling “Avvvy”. We look up and  it is Avy’s best friend from his daycare and that kid had left to go to another school a couple of months ago. Avy had been so sad since he left. His grandparents brought him over and the kids were super joyed to see each other. The grandparents were super nice and told us on how much B talks about A and we rep each other at home and you can see they had missed each other.

So the evening ended up with us looking at the kids playing and it was so wonderful to see nostalgia in the face of almost three year olds. They have so many memories to catch up on in the little lives.  The effect a best friend has on your mood is instant and I really wished those two could go to school together. I suddenly missed my own!

All clear

So I went for my follow up ultrasound last week and met the doctor. Kidneys look fine. Whew relieved! I then started asking him to my Sep follow up sooner since I had some travel plans to finalize. He was so sweet he offered to do it then and there. Ajit and I held our breath. We saw it on the monitor when he left the camera in, praying to not find anything. We then saw a patch in the place the cancer was looking like it and I sunk in, only to hear the doctor say “That is not cancer, it is just leftover edema and will go away”

So yes I got my all clear. Small steps, baby steps.

Avy’s drawings

They have improved so much, he creates complex situations and draws them. Amma, Appa and Avy going in a car, our house living room, etc. To see him enjoy something so much always brings a smile to my face. Here is his drawing of an airplane going through a cloud..

Soy good!

Major Major good news alert!!!!! Avy can now have Soy!!!!!!!!!!!!!!!!!

We are beyond thrilled about it. All of a sudden it has opened up a whole new world for us. Being a Vegan is so much easier than being a person who cannot have both soy and milk.

We tried a little bit last Friday, similar to a food challenge. We had the Benadryl, Epi-pen all ready in case. Over the period of 2 hours he drank a quarter cup milk. We watched with bated breath, no early onset of rashes, which was a great news by itself, and then nothing more also. He slept well, he ate well, he pooped well. So all was good.

Everyday he had a little form of soy, soy milk muffins, soy milks and best of all SOY NUGGETS!!!! I am happy to report as parents we were so happy to see him down the fried soy nuggest!! Tears filled my eye and I could barely see. A big moment.

So tomorrow we are going out for Vegan Pancakes!!! Pancakes are something Avy’s always wants to eat when we go out, but we were never able to get him. Tomorrow we can….

This is Avy at 9 months when we first got him diagnosed, the remnant of a tiny red patch on his left cheek is visible..hmmm….we have come a long way!!!!!

Milestones- Part 2

ALLERGIES…you knew it right?

A quick recap, we have been avoiding a lot of foods, as his blood work (RAST), done when he was 9 months old, revealed high Ige numbers, as they call it.  So we have been avoiding milk, egg, soy, oats, lima beans, chick pea and all forms of nuts. We test once a year and see if there is any improvement and base our decisions on that. Last year, in July 2010 the blood work has not shown decrease in levels, so we had to keep going with the elimination diet.  2010 to 2011 has been a hard year. He started to talk, notice others eating things he cannot, started to understand he is different and asked many questions.

I had happy days when he understood everything, was happy to get his own ice cream, but also had horrible days when he told his Paati, “I don’t want to be special, I just want to eat cow’s milk”. The maturity beyond his age sometimes saddened me.

Come July 2011, just when we as a family wanted some good tidings, it came. There came a wave of good news. His levels ARE coming down, especially milk. I had the results last week, but quite did not know what to do with them. We met the doctor yesterday and she confirmed what we suspected. He is starting to slowly outgrow his allergies.

I am documenting a quick comparison of his Ige levels between July 2010 and July 2011. I am doing this because when I did my research online, I found no information on specific ige levels from a RAST test (see overall chart) and what it might means with respect to outgrowing the allergy. It is not an absolute science, I do not give medical opinion, but it is some comforting information. I am doing only the common allergens.

Before I delve into details, which non-interested people, can skip, I have to talk about my doctor. She is a GEM. I knew from the moment I met her that I do not want to ever change his doctor. She is not a part of the network doctor on the insurance we have for Avy, but still I fight to keep going to her even if it means we have to pay out of pocket. My faith was reassured this time too. She spent a good 45 minutes with us, letting us do all the talking about what we done, his responses, what we would feel comfortable with. We could tell she truly listened, and did not get the rushed feeling we get with most doctors. She talked, we discussed options, plans (detailed below) and we kept talking till we got on the same page. She let us have the flexibility we needed in his treatment, she listened when we presented new research and did not feel blindsided. In short we love her, and even Avy who was shy, came home and said “I like her!!”

I have just recapped by allergen what his levels were, and what the change of treatment is going to be.

Milk: His level went down from a 20.94 to a 7.00. It was so heartening to see. All those meals, all those times, both he and we have felt it as a challenge, it has paid off.  I had done some research before we went, like I always do, sometimes I think I am obsessed about it, anyways. I found an article (here ) published just the first week of this July that shows extremely good results in kids with milk allergy when they have been challenged with baked goods containing milk in them. A very interesting read and I immediately knew I wanted Avy to try it.

I took it to the doctor. She said she had just glanced at it on one of her medical journals and had not read into it and then she sweetly asked if she could take my copy. I had bookmarked the article already and had multiple copies and so happily gave her one.  I liked that she was open to it, and I can understand it. I am in a profession that changes every day and I cannot keep track every small change, every new study every day. But her openness is accepting my research and her conviction to try it for him, if he is in the right age; made me very happy. She said she would get more details and call us if Avy would qualify. We are keeping our fingers crossed, and I know even if not in the next two months, I know we can in the next 6 months to a year. That is big for us!!!

Egg: The level had come down not much, went from about a 20.80 to 16.83. Since it is still high and it is not a priority for us, we have decided to hold off on that and wait for another year to see what his levels do.

Soy: This one increased, it went from a 1.68 to a 2.45.She felt it was low enough for his age, so we could try giving him some food at home. So this is the first order of business for us, and hopefully it goes well, if not back to the wait!!

Oats:  This one decreased from 1.32 to 0.56. So we are going to get this back on his diet. I do believe it flares up his eczema bad, but have to wait and watch.

Nuts: Though his levels are still low compared to normal standards we did not want to dabble in trying them just yet, as Ajit often has mild reactions to nuts, so we have decided to hold off.

Lima Bean and Chick pea: There are no established standards for these and hence left to us to determine what it does. So soon we can try these too.

So there, his list has become a lot shorter now!!!!!!!!!!

So waiting and slowly introducing the foods into his diet in the next 2 years is the goal and I am elated with the possibilities. The thought that the strict avoidance has some pay off is a comforting thought. Having said that, some kids do not truly outgrow even with avoidance, and I think that is okay too. We just learnt to live the lifestyle and if we are true cheerleaders the kids can grow up strong and in control of their lives!

I do want to summarize something about doctor visits and things in general when you have a kid diagnosed with food allergies, as that single appointment every year determines the course of your life for the next year. You NEED to be prepared. Just a bullet point on what worked for us and some suggestions.

Edited to include one more important bullet point in bold!

  • Watch your kids; document any small or large reaction to any accidental exposure. If you think you might forget keep a journal.
  • As your kid gets older and can talk, keep them involved. TELL them what is wrong with them. Hiding the truth can have dire repercussions. Tell them their progress, and believe me they understand more than you would think.
  • When you make or buy substitutes for them, tell them they are substitutes, and that what they are eating is different from others, yet yummy. The true protector for kids with allergies as they grow is themselves. You cannot be everywhere with them. They need to be able to tell when they don’t feel good.
  • Research as much as you can, take print outs of everything you find and that will help you, before you see the doctor.
  • Very important, call the doctors office, about 3 weeks before, even if it means calling everyday, and get a order for blood work BEFORE the appointment, that way you know the levels beforehand. It makes no sense to see the doctor and then get a blood work order. You would have to try and talk to them over the phone to find out what it means etc. Surprising that doctors office don’t tell you this.
  • Use that 30 to 40 minutes you get with the doctor in the most useful way possible.  Ask questions.
  • WRITE down ALL your questions, even the silly ones, even the ones when you read you know the answer to. It will all be worth it, when you walk out of your doctor’s office satisfied.
  • Find a doctor you love, you trust and your gut is almost always right. The doctor should be open to suggestions, should listen to your ideas, to your approaches.
  • You know your child better than the doctor, you see him/her every day, and they see them once a year. If you disagree with the doctor state it.
  • Find out why the doctor feels a particular course of treatment; ask if it has worked on other kids.
  • Be clear when you leave on what you can and can’t do.
  • Make sure you have updated prescriptions for all medicines and a current epi-pen. Also carry the epi-pen with you. I am bad at that too. Give one to the day care center or school.

In short, YOU be your kid’s advocate. YOU need to talk for them, about them as much as you can!!!!!

Good luck to others out there like me, your ray of hope is around the corner too!

The journey does not end here, however the load has surely become lighter!!!!

Milestones- Part 1

After all the not so happy posts, I am happy to do two happy posts!

Milestones, slowly but steadily, one after another have been crossed. In order of increasing importance here I present…

We are Potty trained completely… Yaayy!!!!!!Actually this milestone was achieved end of June and has been going good. No accident at home or daycare and dry diapers at nap and nighttime. So we are thinking of removing the diaper safety net and ending all sort of Potty related issues.

We are writing!! As you all can tell by my previous post! He writes ALL the time. He has issues with C, G & S. He does them the opposite way. He knows it is wrong and is working hard on correcting them. We barely interfere as we want him to learn it. Paati did notice him brining the letter G from our fridge magnets and trying to re-create it!!!!

This is him writing Amma, Appa and Lemon Grasss on bottle (thanks to his daddy)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We are drawing!! His drawing has improved so much. Thanks to Patti, now he writes a letter of the alphabet and draws a word from it. Like A for apple, B for Ball, so on….he can do them all. It is so enchanting to watch. Look below for R for rabbit, and apparently the rabbit is lying down!!

The R and the Rabbit from the R..

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The biggest one of them all in the following post…COMEBACK!

Time moves on…

Time flies. It is going to be 4 weeks since my surgery. I have my good days and back. This is the first full week am at work and I feel good. Energy is slowly creeping back up, minor hiccups now and then, but mostly good.

Been a while since I did a post on the little one. He is doing great. He has enjoyed immensely the unexpected visit of grandma, the plenty of pool visits and having mommy home more. Sometimes he acts with the most maturity when it comes to my health and sometimes he is just a baby, and I do prefer the baby.

He has been crossing his own milestones in all this while. He is WRITING. He can write most of the letters and has most trouble with G and S. He spends most of his time asking us to spell words and he would write. What a joy to watch!!! Of course he now can spell his own name, write Amma and Appa with no help and he is mighty proud of that.

We also had to take him for his blood work this past Saturday. I did this long post last year about our experience (here). This year was a lot different. All through the drive he was asking where we were goin and since I did not want to worry him, I was buying time saying we are going to a building etc. Then his dad told him that we were going to the hospital. He thought for a while and then asked “For who are we going?”. The intelligence of kids!!

I then explained it was for him, to check on his allergies. He was curious he was going to lie down on the white paper. He was playing around till we finished the registration and then we went back to the lab. He did okay when she but the rubber band on his little arm, and she poked him!!! He was shocked and started crying, yet he never moved his arm. They had to take 3 full vials of blood and it was painful to watch.

He got a Dora band aid, plenty of Spiderman stickers and a tight hug from us. He immediately stopped crying and wanted to know why she did that. Most of the weekend was spent on analyzing why she did it to him. A conversation in particular showed me a peak into his little world and little mind. I was explaining to him on how we have to get the results from his blood work and then see his doctor, and I mentioned..

Me: “Avy they took blood because they can see it and tell you about your allergies. We can then go to your doctor”

Avy: “No I do not want to go to the doctor”

Me: “Avy only if we go, can we ask her, if you can have milk and eggs”

Avy: “We will ask her , Can Avy have milk and eggs? And she will say YESSSSSS”

I had no words for a while and I just hugged him. I wish things were that simple, I wish they would say he can do it. For the past few weeks he has been saddened that he cannot just have what everyone is having. He knows he gets his own stuff, his own version of EVERYTHING, but it is not enough. I wish he did not have to do so much growing up at such a little age.

As I often say he is a big man in a little boy. Circumstances for him have always been that he has to face things above his age. Maybe that is why developmentally he is advanced for his age. My feelings are in a paradox now, I feel proud that he is writing and he is not even three years old, that he can grasp concepts so quickly, that he can talks for hours but I am also sad, he HAS to grasp concepts above his age, he has to protect himself from wrong foods that this little age and that he has to feel different.

We get our blood work results and see the doctors next week. Hoping for good news, the little one deserves a break.

 

I peed on it

Today

As I left to my Dr’s office to get my results and get the dumb catheter removed, Little A was in all excitement. This is what he told us this morning, I am quoting.. ”Amma is going to pee-pee doctor, she will lie down on the paper, the doctor will give her mannu (medicine), he will remover her pee-pee bag and put it in the trash, amma will come back home and carry me”. That long sentence made my day!

He also reminded me to ask my doctor if I could carry him. Guess he missed me way more than he could tell.

We left, the whole waiting was hard, but I guess worth it. I got my results. It was a low grade, low stage transitional cell carcinoma. Meaning, it is the best possible outcome. It is a malignant tumor, yet a very superficial one. They have removed it all and I don’t need any follow up chemo. I would need a cystoscopy every three month for two years, then every six months etc.  Chances of recurrence do exist, but then it would be the same stage, grade etc. WHEW!

In short, as of today I feel like I got my life back.

I peed on it (Waiting on that t-shirt from A)

Removal

June 16, 2011

Day of the surgery. I had an inexplicable fear of general anesthesia. I mean it is a crippling fear.  There were million other things I could worry about, but I spent a large portions of the nights not being able to sleep because of the general anesthesia, I worry I would not wake up, the fact that I have to be in darkness. Upon further investigation I found my dad has the same fear!! Go figure. Anyway we got there, I was all ready decided I was going to do just a spinal and stay awake, somehow it gave me a feeling I was more in control.  They reeled me in to get my ready to the pre op ward, while A, his sister and P stayed outside.  Little A and my mom stayed home, it was so hard to leave my little one, mixed emotions, overwhelming emotions.  That has to be a separate post Avy and my diagnosis, so much to write. I digress.

I was pre op all ready begging them to bring my husband in, but the nurses kept chatting. Apparently the hospital gowns come equipped with warmers and it was fun playing with that. Then the anesthesiologist came, a lovely woman, older lady and she talked in the nicest way and told me it would be better if I took the GA. I argued, she asked about my fears, and promised me I will wake up 5 minutes after the surgery. I did not agree. Then she had to go away for another surgery and she told me she will be back.  Then as I was waiting and chatting with my sis-in-law and P, a barrage of doctors walked in and started talking. I panicked, as I just wanted A by me, so I literally chased the ladies and asked them to send in the hubbyJ

The doctors explained it all, the whole procedure and the dear lady anesthesiologist gave me all the reassurance I need, promised not to use a gas mask on me and I finally relented, maybe because I was really sleepy by then.  They reeled me in, I couldn’t bear to leave A, yet I was brave, had to be. I went in, the doctors started the IV, the operating room was not quite fancy like they have in Grey’s Anatomy…lol, but had to do I guess.  They started my IV, and she put a mask for oxygen. I freaked out and the last thing I remember is trying to take it out.  I slept. I woke up as I was reeled out of the operating room, she had kept her word, I woke up 5 minutes after the surgery.

The surgery itself was simple. It was non invasive, the procedure is called TURBT (Transuretheral Resection of Bladder Tumor), they insert a tube through the urethera and carve the tumor out. The whole thing is about 30 minutes. When I woke up, my bladder was full of the chemo drug Mitomycin, and it was the worst sensation ever.  I had the sensation to pee, but they had closed it off. I wish I would have woken up 30 minutes later. However I sat through it for 30 minutes, they drained me and moved me to the post op room.  I was ravenous. They fed me up crackers and Gatorade.

Happy reunion with A, sis in law and P. I had the catheter in, but not in much pain. They kept me for another half hour and sent me home. Tough day!

I came home, little A was confused, but he understood that he had to keep his distance from me. He did okay as he had many people to fawn over him. So the wait started, I had to wait a whole week to get my catheter removed and the pathology result back, and it has been a long one.

Week leading up to the moment of truth

I stayed home, sleeping, reading or watching TV. I had to wear the catheter and it is a PAIN. I wore a large bag for nighttime and a smaller bag strapped to my thigh during the day when I can move about. Little A got the most kick out of it. He called it my ‘pee-pee’ bag. This was the week he successfully completed his potty training, so the sweetest little thing he is he offered me a gummy worm when I used big people potty. LOL. As days went by, he got jittery as I could not carry him, he could not sleep next to me, he could not sit on my lap…so he had his ups and downs.

We all tried to maintain the best attitude we could, and yet we knew all depended on the pathology results and that would determine any further treatment.

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