Jacob & Lili

Jacob & Lili

Monday, November 19, 2012

My Dirty Little Secret

It's been a while since I've posted. Life has been nonstop. But then when isn't it?

Jacob's last trial was Udi's Gluten Free Bread. Udi's uses egg whites in their breads and come scope day I was a little nervous. We had already tried whole eggs with miserable results. But in the end, he passed with flying colors.

Last year around this time he had wanted to trial pumpkin in the hopes of having a pumpkin pie. Problem was that I didn't have enough ingredients in his diet to make anything remotely resembling a pumpkin pie. This year, however, things have changed. We are now trailing pumpkin. I have made pumpkin bread, pumpkin muffins, pumpkin pancakes (not a favorite) and pumpkin cookies. I have made pumpkin smoothies and pumpkin ice cream. And so far, I do think we are going to pass pumpkin.

Frosted Pumpkin Bar
After his last scope the doctor gave us the go ahead to stop one of his day feeds, 3:00pm. We are hoping by spring that he will no long need his tube and maybe just maybe we can remove the tube by September 2013! We have come a long way. While I celebrate his success, I know that there are other kids out there with EoE who haven't been nearly as successful. I wish I knew why Jacob is succeeding while others are not. Then I could wave my magic wand.

Lili has been feeling nauseous. I'm beginning to wonder if we need to do another gastric emptying study. Maybe her new hormones are slowing her stomach down even more than usual. Do we wait it out? Or put her through the hoops?

After a full trimester, she is finally settling into middle school. There was some raised voices (yes that would be me) and some tears (yes that would be her), but she finally found her groove. In January, her class will be going to Yosemite and so I will have to coordinate all her food but I know in the long run it will be a great experience for her.

So what's my dirty little secret?

I have failed my kids. I know logically I haven't. That the issues they have are not my fault. Not my intention. But I think it's the burden that we special needs mom's carry. Every time I get a new report, diagnosis or idea, I wonder why I can't have the normal kid. Then I feel resentful, "How did this happen?". Then I feel guilty. "Things could be worse right?" That annoys me because saying that doesn't make the situation magically go away. And then one of them does something that reminds me why I love them. But then another report comes in and it starts again.

Our lives are not normal. Our week is filled with appointments, fights, and questions. Our friends, we find out, are not our friends really. And our true friends are those we may not even ever meet but support and understand us.

After a year, or two or three, our life is now our normal. The frustrations, the exhaustion, the small victories, those are our normal. The chaos, it's normal. Our life is normal....sort of....

Thursday, August 9, 2012

A Bittersweet Anniversary

On July 26th we "celebrated" an anniversary. A year ago Jacob was admitted to Stanford and the NG tube was placed. All foods were pulled and we started on a new chapter in his EoE journey. Although it was the best decision we have made so far regarding this disease, it was one of the hardest things I have had to do as a mom. Below is the journal of Jacob's symptoms that I kept during the time preceding the NG. How far we have come since then.

Date                   Time                  Abdominal Pain              Notes
12/3/10                                                                             Jacob's 1st Endoscopy
12/7/10                                                                             Diagnosis of EoE - Began Budesonide slurry
12/9/10                                                                             Skin prick testing = negative
12/15/10                                                                           Patch testing = negative
12/16/10           4:30 pm                 3
12/19/10         11:30 am                                                     Chest pain while running
12/20/10         12:29 pm              Pain                               Won't eat
12/22/10           1:59 pm              Pain                               Eating french fries
12/23/10           2:30 pm                10                               Headache
                         3:29 pm                10                               Headache, fever of 100
12/24/10       all day                    Pain                               Headache
12/25/10           12:29 pm              3
                           1:59 pm              8
                           4:00 pm              5
                           4:59 pm              2                                   banana & guava juice
                           6:29 pm              9                                   potato with chicken broth
                           7:30 pm              3
                           7:59 pm              10
12/26/12             8:15 am              5                                     Headache
                           1:00 pm              6                                     Headache
                           4:00 pm              5
                           4:59 pm              7
12/27/10             8:30 am              8
                           9:29 am              6                                     Banana
                          10:59 am             4
12/28/10              1:30 pm            5                                      Headache
12/30/10              6:00 pm            9
1/1/11                  9:00 am            6
1/2/11                  7:59 pm            6
1/10/11                                                                                   Additional labs came back negative, still
                                                                                               having belly pain - 2nd scope to be        
1/11/11                                                                                    Started miralax
1/13/11                                                                                    Emailed doc about possible Chron's
                                                                                                -no call back, no call regarding 2nd scope
1/20/11                                      Hurting                                 No school
1/21/11                                      Hurting                                 No school
1/25/11                                                                                   2nd Scope
1/27/11                                                                                   Biopsies clear, protein in urine, reduced slurry
1/29/11                                       Hurting                                 Throat pain
                                                 12:00 am                               101 fever
1/30/11             all day                                                            fever
1/31/11                                                                                  severe stomach pain, fever all day
2/3/11                                              5                                    positive for strep
2/4/11                                                                                    still no meds for strep
2/7/11                                                                                    xray for constipation, shows moderate
                                                                                              constipation, started mag = BM
2/8/11                                                                                     2nd dose = BM
2/9/11                                                                                    miralax = BM
2/10/11                                                                                    No BM, stopped slurry
2/11/11                                                                                     No BM, unltrasound
2/14/11          6:00 pm                                                             BM!!!!
2/15/11          3:29 pm                                                              BM
2/16/11          5:30 pm                                                             BM
2/17/11          5:30 pm                                                            BM, voiced aggravation with head tick
2/18/11                                         Hurting                             No BM
2/19/11                                                                                  Eliminating eggs, no BM
2/20/11                                                                                   BM
2/21/11                                                                                  BM
2/22/11                                                                                   no BM
2/23/11                                                                                   no BM, stopped taking Strattera
2/24/11                                                                                   BM
2/25/11                                 hurting                                       didn't want to play
2/26/11                                                                                    no BM
2/27/11                                                                                   no BM
                     2:30 am                                                            throat burning
2/28/11                                                                                     restart prevacid, start Sena
                    3:29pm                                                                BM
3/4/11                                                                                     started Budesonide slurry
3/9/11                                     hurting                                     throat still hurting
3/10/11                                   hurting                                     throat no longer hurting
3/11/11       7:30 am                                                               bacon stuck in throat
3/15/11                                                                                  playing tickle monster = severe stomach pain
                                                                                             laid down = chest pain
3/16/11                                                                                    x-ray
3/21/11                               hurting
3/24/11                               hurting                                       wouldn't eat dinner
3/31/11                                                                                   Dr. Torrano (allergist) - eat until Cincy
4/4/11                                 hurting                                       SB chocolate milk and scone
                                          hurting                                         while drinking milk
4/13/11                                 hurting                                      dizzy & leg weakness
4/15/11                              hurting                                         fever - 99
                                         HURTING!!!                               eating mac n'cheese and milk
4/17/11      Evening           hurting
4/20/11      Evening           hurting
6/25/11                             hurting                                        within 5 minutes of eating strawberries
6/28/11                             hurting                                         leg pain
6/29/11                              hurting
7/5/11                               hurting                                         ear pain
7/6/11                               hurting
7/7/11                              10!!!                                             Stanford prescribed periactin
7/9/11                                                                                 no sleep, reaction to periactin
7/11/11                                                                                Stanford prescribed gabbapentin
7/12/11                           hurting                                          started gabbapentin, spoke with Cincy about 
                                                                                           going elemental
7/19/11                          hurting                                           hard to wake up
                                      1:00 pm                                        Spoke with Dr. K - trying to track down Dr. C
                                                                                          won't take the gabbapentin
7/15/11          7:30am    hurting/headache                           call from Cincy = I have to coordinate NG
                     4:30am   hurting/ear pain/hand hurting
7/17/11         5:30pm          hurting                                     veggie soup
7/20/11         5:30pm                                                           leg pain
7/21/11         4:00pm                                                         no beds available at Stanford
7/22/11        12:29pm          hurting                                    won't eat lunch
                    1:45pm                                                           able to eat
                                                                                            Stanford is requesting a bed for Monday
7/23/11        4:59 pm                                                          stung by a bee on the right foot, extreme pain,
                                                                                           complaining of pain in both legs
7/24/11       7:00 pm                                                          stomach pain and foot itching
7/25/11        7:59 am         hurting                                       won't eat breakfast
                   9:00 pm                                                            admitted to Stanford
7/26/11       1:59pm                                                             NG placed

Friday, June 15, 2012

Great Expectations

Jacob had yet another scope. This one to see if chicken and turkey are a pass. We also had his button changed as well. The biopsies came back showing 0 eosinophils in his esophagus. Meaning, chicken and turkey are a pass and that the Nexium is keeping his acid reflux under control. Jacob decided to trial eggs next. Things seemed to be going well for about 3 weeks on the egg trial, or so we thought. Two weeks in we started to notice that he was chewing up his food, storing it in his cheeks and then spitting it out. What we didn't piece together was his behavior becoming more and more volatile day to day.

We didn't put things together until our trip to Oregon. Every year, since high school, I have made a pilgrimage to Ashland, Oregon for the Shakespeare Festival. For years, this trip has been the highlight of my summer. The past 2 years we haven't made the trip due to finances and Jacob's health and so we decided to restart the tradition this summer.

I have always loved Ashland. We always spent time walking around the small town, meandering in and out of the cute little shops, eating, and of course seeing the incredible plays. This trip was different. Having 2 kids with food allergies and having to accommodate those needs put extra stress on the occasion. And then there was Jacob to contend with. Not realizing that he was failing eggs, his behavior was beastly. It took more patience than I had in my reserves to keep from typing him to the nearest tree and slapping duct tape across his mouth. Although I enjoyed the few moments of peace I was given, overall my Ashland experience was not what it used to be. And so I wonder if I will go back again.

The night before we headed home, I realized that Jacob was failing eggs. That his esophagus was inf lammed so he wasn't able to swallow. That he was in pain and so his beastly behavior was his way of telling us this. We stopped eggs and within a few days he was back again.

Then we came home to family drama that for once didn't involve my kids. But it has spilled over into our already chaotic lives. Our trip to Italy has been cancelled. Although I was looking forward to voyaging to Europe, I can't help but feel some relief. I was dreading having to pack up all of Jacob's medical supplies and then trying to feed him while abroad.

Jacob has decided to now trial apples. Mostly so he can drink something other than water. Time for more creative cooking!

Saturday, May 12, 2012

National Eosinophilic Awareness Week

National Eosinophilic Awareness Week starts tomorrow. This is Jacob's story. Please share his journey and help spread awareness. We need a cure.

Wednesday, May 9, 2012

Another Ring Added to the Circus

So far Jacob's chicken/turkey trial is going well. Next week is the scope to verify. And although I may not make it through the end of 5th grade, Lili is doing well. So why rock the boat? I keep asking myself that. Seems I just can't float along. I have to stand up and jump around until the whole thing topples over again.

Jacob hates doing homework. I mean HATES it. The minute we hit the door the battle starts and it usually ends with him crying and us asking ourselves "and we had kids because...?" I know the kid is smart, scary smart. But I began to wonder if he might have some of the same processing issues that his sister. And so his resistance was not in fact a plan to drive me crazy but his display of frustration because he was having trouble. Frankly, I had hoped that it was a plot against me. I could deal with that. But after having the psycho-educational assessment done and given the results, I realized that I would indeed have to add a few more rings to our already busy circus.

As it turns out the kid is more than smart...he's a genius. A certified genius. "Overall his verbal and perceptual cognitive abilities are in the High Average to Superior ranges..." However with genius comes difficulty. And for Jacob this means he has "difficulty on tasks requiring attention, working memory, executive functioning, social perception, and fine motor control. He also exhibits some hyperactivity, impulsivity, and cognitive inflexibility."

Good news, some of this we have faced with Lili so we are familiar some of the territory. Bad news, bring in the clowns. We've already put him back in OT 2 days a week. Now he will work with a therapist who works with gifted and sick children and who will work us on how to deal with his frustrations and explosive behavior. He will be evaluated by a speech and language therapist on Friday to determine what interventions he needs in that area. And he is working with a tutor who specializes in kids with learning differences.

This summer will be spent putting the rings together. Hopefully, but the time 3rd grade starts, we will have things up and running. And maybe even a couple new foods...

Thursday, April 19, 2012

The Feeding Tube Diet

This week has brought out the mama bear in all of us with children who survive because of their feeding tube. Apparently the new diet trend for blushing brides is a feeding tube. The NG tube is inserted through the nose, goes down the esophagus and empties into the stomach. Through the tube, these woman receive a 800 calorie formula per day for 10 days. The goal is to lose 10 to 20 pounds. Extreme dieting has always been a part of our culture. Women have used drugs, shakes, low carb diets, low fat diets, eat only green food diets, don't eat anything that is white diets and dabbled in various surgeries. But the feeding tube diet seems to have really hit a nerve.

Over the summer Jacob became severely sick. We couldn't control his symptoms and various food eliminations and drugs were not working. We made the decision to stop all food. To do this he would have to ingest 1800ml of a special formula everyday. The formula is just plain disgusting. My husband was brave enough to try it and said, "it tastes like dirt." So how do you get a very picky 8 year old boy to ingest 1800ml of a dirt flavored formula, everyday. You insert a NG tube and pump it directly into his stomach. When we made the decision, we knew we would face a number of questions. "Isn't there another way?" "You're going to do what!" "It's all in his head, just make him eat." "No food, why would you do that to him?". And then we would face the stares, the only outward sign that Jacob was indeed sick. We fought the GI, the pediatrician, and I was very aware that we could end up in a battle to keep control of our son's medical treatment. Fortunately, it didn't come to that, but for many parents it has. Once the NG was in we saw a difference within a week. His pain was subsiding and my silly boy was coming back to me. This was reassurance that we had made the right decision despite the emotional pain that this treatment inflicted on us. Feeding our child and the joy that comes with that was no longer part of our world as Jacob's parents. Jacob now has a G tube and is doing well. He's gained weight! And slowly he's getting a few foods back.

So what baffles us parents is the attitude these woman and the medical staff seem to have with this "diet". They seem to be proud of this discovery. Having a feeding tube and carrying around their feed seems to be almost a symbol of status; look how much money I can pay to become thin. Meanwhile, us parents are tortured everyday when we see other children eating at will, knowing that our kid may never be able to eat even the simplest of foods again. We have to fight against the stigma of having a chronically sick child. We have to fight the medical community to do what we know is right for our child. And yet, these woman, don't seem to see the image they are projecting. Seated side by side, a woman with a feeding tube praising her doctor for putting it in because she has lost so much weight. That it didn't hurt putting it in, it was no big deal. And now she can fit into her size whatever pants. And next to her is the child who looks healthy, with his feeding tube. He looks like he's got weight on him, is growing, but he isn't allowed to consume any foods, none at all? Who cries at the mention of having to perform a tube change because it means being held down and mom crying in the corner as she watches.Really stop and think about where your judgement would be directed; the woman who has found this ingenious diet or the mom who seems to be torturing her child?

Maybe it's hard to understand where we are coming from. You never really can understand until you are in it. But please think about those children and adults with feeding tubes who need them to survive before you laugh at these silly women and comment how gross the tube is and how ridiculous it is to carry that bag around every day. This is what we do everyday. We deal with gross everyday.  If anything I pity these women. Trying to loose weight using a feeding tube is a choice. A feeding tube for those who are sick means life.

Wednesday, March 14, 2012

Long Lost Update

Oh goodness! It's been a very long time since I was on here with an update. Jacob successfully passed his banana trial. We also snuck in maple syrup and soy free earth balance! Unfortunately, he failed potatoes and dahl (an indian lentil soup) right after. I cried after the dahl fail. I had hoped that he would pass and then maybe the g tube would be a thing of the past. It was heart breaking. So today he started beef today in the form of a 100% all natural beef hot dog. I'm hoping this passes for his sake. He loves his hot dogs.

Over this past weekend our family had the privilege of attending a special event. Jacob was invited by Wells Fargo Bank to Disneyland! As part of a community building exercise, executives of Wells Fargo were educated on EoS diseases and how it affects
our kids. Then they were challenged to make a "cake" of toys for the kids. And then Mickey came out. The kids showed Mickey their Mic-Key's, so cute. Hopefully we didn't scar the poor person behind the mask. The kids received free passes to Disneyland and we spent 2 days at the happiest place on earth. It was so awesome to see more awareness being spread about this horrific disease.

Jacob's next scope is up in the air. While writing this blog post I took a break to pick up the kids. Jacob told me that he was having pain with the hot dogs, another fail. He's so frustrated. He says he doesn't want to trial any more foods ever. Can't say that I blame him. So we will take a break. Maybe apples next.

Monday, January 9, 2012

I hoped it wouldn't but it happened.

Saturday started off fairly well. I got up. Put in my time at gym. Went to my 2nd ever appointment with my new therapist, which I'm really getting into. Then I headed over to Whole Foods and spent millions on very little. My friend was painting her room so I then decided to go over to help and vent.

Painting has a therapeutic effect. I don't know if it's the fumes or the muscle involved in rolling the paint onto the walls, but after painting for a bit I was feeling good. Then my cell phone rang. I looked at who was calling and saw Lili's name. What in the world? I knew instantly something was wrong. She never calls me, she hardly ever uses her phone other than to text her best friend on occasion. I took a deep breath and answered.

Sure enough, Lili, doing her best to keep herself composed, informed me that Jacob's tube had come out. It what? It came out? #@$&! and many other expletives! And of course it happens when I'm not home. To explain. Jacob has a g-tube in his stomach. The surgeon cut a hole into his stomach. Then a plastic tube is put into the hole with one end emptying into his stomach and the other exits out of his body. The outside end has a port that we can open and close and we "hook" him up to his feeding tube extension when he needs a feed. This tube that is in him is called a Mic-Key button. What's keeping this button from falling out? At the end of the tube that is inside his stomach is a small "balloon". It's filled with about 3-5cc of water forming it into a small marble shape. This marble shaped balloon prevents the button from coming out. Yes, you read that right. A small piece of plastic keeps this thing from coming out of his stomach. So Jacob was on a feed and was playing. Somehow he stepped on the feeding tube extension pulling the button out!

I got Gary on the phone, told him where to find the catheter so that he can put it in the hole in Jacob's stomach. Why? Because if you don't put something in the hole where the button once was then it will start to close. Then I jumped in the car and made a mad dash home.

Another explanation: California is huge. There are huge cities like San Francisco and LA to small no name farming towns in the middle of nowhere. Morgan Hill is a pretty small place. Too big to be called a town but is not a big city. You can get from one end of town to the other in about 10 minutes if you hit the lights the right way. Going from my friends place back home is all small back country roads. So here I am in shear panic, driving like a lunatic hoping that there isn't some random sheriff hiding in wait. I made it home in 5 minutes.

I raced into the house, yelled at Lili and her friend to get into the car, and ran into the kitchen. And there's poor Jacob, shirt off, trying to stay calm. We got him into the car with Gary sitting next to him. I took the wheel, because as I said before I can drive like a lunatic when needed, and drove the 20 something miles to the ER in San Jose.

Back to my big city versus small town explanation. The closest ER is in Gilroy, about 10 minutes from our house. Gilroy is famous for the garlic which can be smelled from miles around. Beginning as a small farming town, it hasn't evolved into too much more than that. However, San Jose is a huge city, bigger than San Francisco, the heart of Silicon Valley. You see my desire to speed my way to San Jose with Jacob who has a hole in his stomach.

Once at the ER the intake nurse did her thing and registered Jacob. She complimented me on how organized I am, having had the foresight to grab the spare Mic-Key button that we had for just this type of incident. Unfortunately, I wasn't in the right frame of mind to bask in the accolades.

We were ushered to a bed. We went through the retelling of why Jacob has a g tube. Answering the, he has what disease question? Why his doctor is in San Diego. So on and so forth. First to the nurse, then to the resident, then to the ER doctor. Meanwhile, Jacob is trying his hardest to not lose his mind. Finally, we got down to business. After talking through Jacob's stalling tactics and his command to "help me calm down", the new button was put back in. We left the ER in record time.

While I had hoped this would never happen I'm glad it did. At least now we know how to put a new button back in provided we can keep Jacob calm enough for us to do it. We keep hoping he won't have to have his g tube for long but after about 15 weeks we only have 2 safe foods and have had to pull pork. Somehow I think the g tube is going to stick around.

The Maupin's

The Maupin's