Endoscopy #2 result

Little M doesn't have juvenile polyp and for that we are very thankful. The bad part is, which I wasn't clear about before, Little M not only has eosinophil white cells in his esophagus, they are also present in his stomach. He has both eosinophilic esophagitis and eosinophilic gastritis. 

As far as the eos count with the 2nd scope, there are zero in his esophagus (150 before) and 16 in his stomach (50 before). This improvement is due the steroid treatment, which is a not a log term solution. The GI and I have decided to go with the top allergy avoidance diet plan. Little Ms diet will exclude dairy, eggs, peanut, tree nut, soy, shellfish. We decided not to include wheat in the diet elimination because the doctor said it would be a hard diet and we don't want Little M to lose weight.

We are now 4 weeks into the diet and not doing too well. The vomiting is back and we don't know why. Obviously it means that we have not taken out the bad foods. We have been keeping a food diary and out best guess is green beans and chicken. So we are adding these to the list of bad foods. We are praying that this takes care of the symptoms.

I am keeping positive but everyday there is vomiting is etching away at my positivity. This disease sucks. 

Talking with little m

Little M: I have boobs! Yeah, I have boobs!

Me: You don't have boobs!

Little M: When I was born, did I have boobs?

Me: You have nipples.

Little M: uh huh. Oh yeah! I have nipples! I looooove my nipples! (sing song voice)

***I can only guess that this topic was due to the extreme cold temps.

Endoscopy #2 and Colonoscopy

Little had his 2nd endoscopy a couple of days ago and colonoscopy. After a failed attempt a week and a half ago, it finally happened successfully. We did not do the magnesium citrate route this time around, and opted for Miralax and a slower approached (one extra day). It worked out so much better. He didn't even notice what he was drinking. As always, it was tough to deny him food though.

There was a marked difference in my attitude toward these procedures. I was not worried on the drive over; I was much more relaxed. We came a little early so we had to keep each other company. This time, the attending anesthesiologist was a pediatric one and she remembered Little M from his first endoscopy. She said, "I remember you! You were the very good little boy!" As was the case before, everyone was impressed how good he takes his needles. The one nurse I left him with the first time in order to eat quickly was there, and she too remembered Little M. He remembers her as the nurse who played cars with him and that always lost. 

I accompanied Little M to the OR and only left when he was given Propofol to fall asleep. The endoscopy alone lasted about 15-20 the first time so I was expecting at least that amount of time. Our GI told me that the time for the colonoscopy would depend on if and how many polyps he finds because he would have to remove them. 

I was keeping an eye on my watch closely, and at 25 minutes later I saw my brave little guy being wheeled out. Imagine my surprise and I knew exactly what it meant. It meant that there wasn't much found! The anesthesiologist told me that everything looked good on her end, but she was going to have to let the GI talk to me, but that it looked good.

Little M was brought to the PACU (because he was young) in order to recover. It took him longer to wake up this time around. The GI told me that his esophagus looked good and that we are at baseline for his eosinophilic esophagitis and that his colon was clean - no polyps. He apologized that we needed to do the colonoscopy based on his consult with the expert when the other doctor told him that the polyp found in small intestine was juvenile polyp, but at least now we know he doesn't have it. Thank you, GOD!  We have to continue dealing with the EOE but at least we have no 2nd problem to worry about.

We won't know his eosinophilic white blood cell counts from the biopsies until our follow up visit and at that time the GI said we have a lot to talk about. Having researched Eosinophilic Esophagitis, Daddy and I already know what we want to do. We are going ahead with food trials based on food avoidance of the top 6-8 food allergies. We have come this far to leave Little M with a "patch" solution. He can eat whatever wants with the current medication but it is not a long term answer. We need to do our best to identify what his body is rejecting in order to avoid whatever it is/they are. Based on others who are going through this terrible disease, we will find many hiccups but we have to remain positive. 

pre-k class concert

Little M's class had a mini concert for the holidays as their Christmas party. They sang a few songs. Little M was a little wiggly and pulled his hat down his whole face. Thankfully one of the teachers came and fixed it. On this video, you hear "Hey!" loudly. That's my boy.

endoscopy and colonoscopy that didn't happen

The day started early with a nebulizer treatment of budesonide and albuterol. An hour later the fight began to get him to drink 2 oz of magnesium citrate. And yes, it was a fight. After of half an our of struggling and going nowhere, I prayed it was ok to just skip it and headed 2-hours south to the hospital.

The road was long, Little M was busy with his movie and I was left to stew on my own fear and worries. Tears, panic, ugly thoughts, horrible thoughts came and went.

Little M was prepped, I was asked a million questions. He was brave with the IV, but it was just not meant to be. The anesthesiologist didn't feel that proceeding with the colonoscopy and endoscopy was the right thing to do because of his cold and asthma. I covered my bases and said I mentioned this 2 days ago to the doctor's nurse and we were told it was ok. But ultimately, the person was a nurse and not an anesthesiologist. Everyone was apologetic and disappointed especially upon hearing that we drove from Albany.

I was ok. I'm tired, starved, but not as starved as Little M who hadn't eaten anything but juices since yesterday morning. I am thankful because I think this happened for a good reason. Everything happens for a reason and I will leave it at that. God has a reason. Until next time.

allergy testing

The next step in Eosinophilic Esophagitis is find out what foods are making Little M miserable so off to  allergy testing we went. His back was swabbed and the nurses commented on how little his back is and that they would have to make all the pricks fit.

The pin pricks were painful for Little M. He wriggled and he winced but kept quiet. After 15 minutes, there were a lot of welts. But the right side of his body didn't form welts so the nurses had to prepare injections to put on his arms.

I thought maybe 6 or so injections, but no. There were about 20 and I was told to hold him down. This one was painful for my little guy. He cried. He cried silently. He didn't scream, he didn't thrash around which was to me, a lot sadder. He took it better than adults and the nurses told him so.

He tested positive for dogs, cats, molds, dust mites, trees, grass. For food he tested positive for rice, wheat, soy, eggs, peas, green beens, chicken, beef, lamb, pork.

As far as food allergies goes, most people are only allergic to a few. Being 3 years old, and the history of skin tests, it is deemed not highly reliable but this test does give people a starting point on which foods to avoid and reintroduce in order to narrow down the list.

From what I've learned, all foods are eliminated at once for a couple of months or until the absence of any symptoms and then reintroduced one at a time. Each time a food is introduced, we determine whether it is a pass or fail. Any symptoms would be a fail. We wait a certain amount of time, and then another endoscopy to wait for a clean one before another food is introduced. 

Pause. Breathe. Breathe. Breathe. 

I thank God for giving me such an easy going kid as my youngest. Ever since birth we noticed how he just rolled with flow. I dragged this little monkey everywhere, to his sisters and brother's appointments, my appointments, school functions, etc. I still do. He was easy. Nowadays he is exercising his own will, but he is such a great kid. I thank God that his siblings are in school and I can take him to his appointments without much disruption to our routine. I thank God it's not cancer. I thank God it's not life-threatening. I thank God. But being thankful doesn't stop the bad days from coming.

Eosinophilic esophagitis

Eosinophilic esophagitis is Little M's diagnosis after his endoscopy in August. In September he had allergy testing and tested positive to all meats except fish and shellfish, and tested positive for rice, wheat, soy, green beans, peas. After a year and a half of constant vomiting, we finally have an answer and it's all hard to take in. 

So after all that I have read, there are children out there who are younger than Little M who only have a handful (I read of some with only 5 safe foods to eat) of foods to eat along with a formula to sustain them. There are children in constant pain, children who are in feeding tubes. There are adults who have gone undiagnosed who are facing the possibility of esophagus replacement. 

The first step for us is to narrow down the list of allergen foods by eliminating them all and them reintroducing one at a time, followered by an endoscopy after introducing one kind of food. In such a shock after the allergy test, I started refusing little M bad foods and he went hungry for a couple of days. It was depressing.

His GI has ordered a different medicine (swallowed asthma medicine with sugar) without avoiding bad foods. I agreed. But how can one go through life being allergic to certain foods and not avoid them? It is a patch solution. While doing research there really is no way to do this without taking away the foods and giving them back one at a time.

The magnitude of this realization is immense. What will we feed this already small guy? I had a good few days and thought we can do this because what else can we do? The  days later I had a breakdown. What is his life going to be like from now on? What am I going to feed him? Bad days. 

Thankfully there are online communities who have families supporting each other through this life long journey. They validated my need to grieve, but said I have to be strong. Daddy is being positive for me, but sometimes it's hard. People don't understand. How can a happy active little guy be sick. He doesn't look sick. Surely all he has to do is avoid the foods he is allergic to. I wish it were that simple.

His life is going to be full of hospital visits. That alone is depressing.

I am thankful though, that he isn't like some kids with this disease that are in constant pain.

I can do it myself.

The other night, Little M refused help in turning his PJ top right side out. He has been doing it for 5 minutes or so before I grabbed my camera. Talk about that a stubborn monkey.

first dentist visit for little m

After being to the dentist 4x 6 months months, and then once last week, it is finally Little M's turn yesterday.  It was his first visit and he was of course a pro. He knew where to go, what to do, and where to find the treasure chest when he was done. Excellent first visit!

Outdoor lover

Some mornings Little M wants us to take a walk around the apartment. Today he wanted to ride around in his plasma car. But every time he saw a bug, he stopped, flopped on the ground and exclaimed, "Awww, how cute!" He especially loves the ants. 

On this picture you can see a black dot in front of him that he just kept talking to. After I while I told him we needed to go. He responded, "No, Mommy. He would be all alone!"

In a lot of ways, he is becoming a lot like his big brother.

My handsome little guys

Today is spring picture day at school, but only Big M has made it to school. J has been sick since Sunday night, and last night K had a fever. She doesn't act sick but I don't want the kids at school to come to my house and curse me for sending sick kids to school. 

Big M is the only that isn't sick and he is avoiding his brother and sisters like the plague. 

I can't believe my little baby will be 3 in a couple of weeks. He isn't a baby anymore.

And this guy? 8? For real? Smart, good looking, athletic...he will be a lady-killer.

Failed weaning from Prevacid

After being on Prevacid twice a day for 3 months, I took Little M back to the gastro specialist last week. He is vastly improved and have gone from vomiting 6 days a week 2-3x/day to about 2x/week. We finally no longer have to travel with a little bucket and we couldn't be happier.

The follow up visit is to see if the medicine is working, and if it controlling the reflux to try and wean him off of it. The doctor decided it's time to try 1 pill a day for the next 2 weeks, and if that goes well to wean down to 1 pill every other day. From the financial stand point, this is excellent as it costs us $430 a month for this medicine. From a medical stand point, we are excited to think that maybe the reflux problem is behind us.

On the 2nd day of being on 1 Prevacid a day, Big M vomited. I couldn't decide whether it was due to other factors because he, his brother and sisters were running around outside when he stopped to throw up. The next day after that, he threw up in the morning again. At that time I was beginning to think it may not be a coincidence. That evening, he threw up again. By that time I am pretty sure it wasn't a coincidence. So we decided to go back to giving him the pill 2x a day. I think I might try a few more days back to 2 pills, and then try again with 1.

The doctor said it's perfectly fine for a 2-yr old to be on Prevacid for a few years, keeping in mind that we will try to wean him off 3x a year. The only time we would be concerned is if in about 3-5 years and he is still not controlled, he would start looking at why we can't wean him off.

Daddy and I are not as distraught as before when he was constantly vomiting, but we are still praying for the best. Thankfully he is growing well. Just a couple of days ago, Daddy noticed that Little M seemed taller. I didn't think anything of it, until the PJ I made for him over Christmas seemed a couple of inches shorter. In fact, he did get taller. He is now 3 ft tall, but still 31 lbs. He was 30 lbs about a year ago, but having grown taller it would explain why he hasn't gotten heavier.

recent pictures

Miss K with her new dress I made for her.

Daddy & Mini Me (Little M)

Daddy & 3 kids.

Little M was put on time out. "Again?," he asked. Yup. Again.

It's never too cold to take a walk

Little M wanted to take a walk this morning. Never mind that it was 4 degrees out there. For a native Texas he can sure tolerate the cold. Although, with negative windchill a for a straight week 2 weeks ago, we did keep indoors. At -10 all the exposed skin starts tingling within 2 minutes. Thankfully that was just that week an we are now back to above zero. We are going to reach upper 40s next week. That would be quite a heat wave!

the biggest scare of my life

A week and a half ago, I was home with the girls and Little M. Daddy and Big M attended a family math night at school. It was bed time and I was busy getting the kids dressed and ready to go to bed one at a time. While I was helping one, the other is in their room with Little M playing. When J was done, I told her to go back to her room, and I took K to the bathroom. I saw Little M playing. About 5-10 minutes passed and K was done. When I went back to their room, Little M was no there. I call out, and I didn't hear him. I asked J where he was, she didn't know.

I call out to our room and no Little M. I went back to the kids' bathroom. Nothing. Big M's room is locked because he doesn't want anyone playing with his Legos so I skipped that room. I went downstairs yelling Little M's name. Nothing. I run back upstairs and checked the rooms that were locked, maybe he got in and locked himself. Still nothing. Maybe 5 minutes passed, I was still yelling, still nothing. I went up and down the stairs so many times, I lost count. Once again I ran downstairs and checked the doors. They were locked. If he had gone outside, the doors wouldn't be locked. But I checked outside anyway. Nothing. I opened the basement and garage. No luck. In the meantime I was screaming his name and banging the walls in hope that I would scare him out.

A few more minutes passed by and I began to panic and cry. My girls saw me and started panicking too. I started to imagine that if Little M was somehow hurt or suffocating and couldn't answer, enough time has passed that he would really be in trouble. I picked up my cell phone and decided it's time to call 911. But before I did I dialed Daddy instead. I was panicked and talking loudly, "I lost Little M. I can't find him anywhere!!" At that moment, J yelled out, "I found him!"

"WE FOUND HIM! EVERYTHING IS OK. DO YOU UNDERSTAND ME. EVERYTHING IS OK!," I yelled to Daddy and hung up.

J said she heard a noise in her closet and then found Little M. I had looked there before, and didn't find him. He must have really been hiding. I sat on the floor and cried and tried to calm my breathing. I was hyperventilating. I was spent. I asked the girls to go ahead and go to bed. I stayed on the floor crying. Little M looked at me. I looked at him angrily. "You are NOT to hide from Mommy! You have to answer me when I call you! I am angry!"

Little M looked at me, "No. I"m angry! The fireman will get you!"

I was shaking. It took a lot of time to recover in order to put him to bed. T

That was the scariest thing I have ever gone through.

toddler story telling

When we went outside to wait for the school bus, Little M and I pretended we were in the beach. It was chilly, so it was a fun play. We walked back and forth in the side walk and saw a shark. It tried to get us so we ran away really fast. We then decided to walk back when we were sure it was gone, but crabs tried to pinch us and run after us! This is Little M retelling the story to Daddy at dinner.

2 years, 9 months old and very smart

The other day I told Little M that it was time for a nap. He looked out the window and said, "No, it's not! It's daytime!"

On a crazy evening after evening, Little M asked me for juice. I had just sat down and wasn't ready to get up again so I told him, "Not now." I heard him go to the kitchen, came back to the livin room and started digging through the box of diapers mumbling to himself, "Wipes. Need wipes." After he found the wipes he ran back to the kitchen. After a few more minutes he came back to me and asked, "Juice, Mommy?"

"In a little bit, baby."

"I clean up kitchen, I get juice!" I had no choice but to get him what he wanted after that.

The bravest guy I know

After countless phone calls to the insurance and doctor offices, Little M finally had his x-ray this morning. He was told to fast from midnight on, which was hard in a 2-yr old. We checked in at the hospital, got dressed on a gown and then on to the x-ray. He had to drink barium. The techs asked if he could drink from a straw, but I said the real problem is whether he would keep drinking the stuff. One tech said it wasn't that bad. I say, tell that to a 2-yr old.

In comes a doctor who seemed to be more adept to dealing with a little person. He ordered chocolate flavoring and the sipping began. But who can expect a kid to keep guzzling that stuff? He sipped it like fine tea, which apparently was cutting it. The divot called out for a syringe to connect to a straw so that the tech could push the liquid quicker. It worked well, even though Little M spit some of it.

Then the platform he was standing on was tilted into a table. I talked to Little M to pretend it was a spaceship, and it worked. I even got a smile. While laying down, he was made to turn this way, that way, arms up, arms down, turn to the tummy and back again. He did everything with a peep. The doctor asked me to ask him to cough several times and he did. He did great!

When it was over the doctor showed me the pictures. He explained that there was nothing anatomically wrong with my baby. He did have reflux, but at least this was a big cross out of our list.

We walked back to the car, and as soon as we were buckled in I called Daddy. All I could utter was that there was nothing wring with Little M's anatomy before emotions spilled out and ate blocked my words. I had no idea I was even keeping these worries in until they escaped. Hallelujah, thank you God! Thank you, thank you, thank you! There were prayers answered, worries erased and things events that were forgotten. All that mattered was that my baby was ok. We still had TI figure out why he keeps vomiting but we worry about that later.

I took my small guy to McD for breakfast afterward. He ate 2 1/2 hash browns and it was perfect. He talked to everyone, smiled at everyone, and wandered the floor. It was perfect.

Fun with daddy

Little M loves goofing around with Daddy. Sometimes he wants To be just like him.

Look out, world. The Collins brook is taking over!

I can hardly believe that 3 of my children are off to school. My girls in kindergarten, who would have thought. I remember the assembly-line process of changing and feeding them as infants, and now they are in school. I can't even remember the in-between.

K, Big M, J looking like rock stars! They were all excited.

We were outside waiting for the bus about 10 minutes before our scheduled pick-up. Of course we knew that buses would be late with parents trying to figure things out and taking pictures. Little M had to have a backpack too. What he didn't know was that he wasn't going in the bus, so it was a big tantrum. He "wand machu, dodo and tatie!" Then he cried and cried after Daddy left for work. After that he started asking for everyone, like his Nana!

Little M and I headed to school for the parent coffee, but we arrived there much earlier than the kids. I got to see K find her class. She saw me and waved with a big smile in her face.

Then I saw J. She is all smiles here but as they marched to their classroom, she wanted to make sure that I could pick her up from school. I had to remind her that she is riding the bus but that I would be waiting at the bus stop. She had the saddest look in her face after waiving goodbye but she marched on. She is wearing a picture necklace of her and me, and Daddy and her. I told her she could look at the pictures when she felt sad.

After running some errands, Little M and I had lunch together at a local restaurant. We had Bacon, scallion, spinach quiche and sweet potato soup. He loved the food. He was a handful, and it took a while for him to stop asking for everyone but we did enjoy our meal together.