Jacob & Lili

Jacob & Lili

Saturday, June 25, 2011

Growing Up

So far my blog as mostly dealt with Jacob's EoE. But for this post I want to focus on how proud I am of my babies. Jacob has OCD, ADD and high functioning asperger's. All of this combined with EoE makes life challenging. This summer I signed him for a camp for kids with special needs at DreamPower. Working with horses, the kids develop so many skills to help them grow and develop. I wasn't sure how Jacob would react to me leaving him at a camp with kids he didn't know. I was so surprised and so proud when he immediately took to his big buddy Max. He loved the camp and I do believe we may have conquered some of his anxiety issues.

Lili participated in another horse camp dedicated to English riding. Not being on her ADD meds because of the Gastroparesis, I was a little worried. But her riding improved so much. She truly loves being on the horses. There is something special about a horse.

More good news..my little man Morgun is doing a little better. His body is still infe
cted but he is improving slowly. He was transferred to Oakland Children's with the hope of going to Cincinnati Children's but those plans have changed. He is now being transferred to Stanford Children's so the immunology specialists there can try and pinpoint the problem. He's gone through so much but he's a trooper. His dad is back from Bahrain but will have to ship out again soon. So for the time being Gunny is enjoying his time in the hospital with both mom and dad.

And more good news! We have received our first donation for Jacob's Walk for CURED. Thank you Sarah & Vinnie at Alice radio in San Francisco. What a huge thrill it was to sit in for the show. I was very much star struck.

Tomorrow we leave for Maui! Finally a chance to relax. A much needed respite in the Maupin household. Aloha!

Saturday, June 18, 2011

Morgun, Jacob and living with EE

When Jacob was first diagnosed I joined a few support groups, one being a support group for local families living with EE. We met Morgun and his mom Mechelle at a gathering for this support group and I was immediately taken with this 18 month old handsome boy. For the past month this little boy has been struggling. He became so sick that he spent 10 days in the hospital and ended up with a g-tube. He is now back in the hospital. Today I made the drive to Walnut Creek to offer whatever support I could.

Morgun is running a low grade fever, he white blood cell is through the roof, and he has infection running through out his body. He can't eat, his g-tube isn't doing the job and his doctors are at a loss. The plan now is to transfer him to the local children's hospital where surgery will be done to identify the infection. Then we will be flown to Cincinnati Children's Hospital, where hopefully the EE experts can help him. There are many questions and no clear answers. Could he have mitochondrial disease, leukemia, have the eosinophils infiltrated his blood stream? Could this happen to Jacob?

His dad has been serving in Bahrain and is now being flown by the Red Cross on an emergency flight to be with his family. Mechelle has been doing this alone and I can't imagine how she is able to stay sane through this. Today I met her mom and 2 of her friends who are rallying around both her and Morgun.

Once back at home, Lili and I went down to her dance studio to promote Jacob's Walk for Cured at the recital. We had a lot of interest and one older lady pulled out $100.00
and gave it to me. I was stunned and so grateful. Hopefully, this money will help these doctors find answers so little ones like Morgun do not have to suffer like they are.

After the recital, Jacob went to a superhero party with our congregation. He had a fun time despite not being able to play the games because they involved foods he can't eat. He couldn't have any of the food offered for dinner either. I tried to keep it light and fun for him but it broke my heart. I reassured him later that I would have a food friendly party for him next month. It'll be a lot of work, to have to custom make all the food, but if he can have a party where he can participate in every aspect like any other kid, then it's worth it.

Thursday, June 16, 2011

Small Smiles

I can't just sit here and do nothing. So I've decided to organize a 5K walk to benefit CURED. CURED is a non-profit whose goal it is to raise money for medical research for eosinophilic disorders.

I've run plenty of 5K's and have run 2 half marathons and it's always a thrill. Being in California, us granola, sun loving folk are always looking for a run/walk so why not raise money to help my son and so many other kids who suffer with this disease.

I'm off to a good start I think. I've made the flyers and tapped into a few contacts. We live in a small town so I'm hoping that the community will rally around this cause. I got some exciting news today that I can't wait to share with all of you but I have to keep it under wraps until I know for sure. In the meantime I smile to myself. I have a purpose in this disease. To raise awareness and help find a cure. I may not be able to give Jacob back his food but I can help move the process along.

He is now off all animal proteins. He is a vegan and then some. To supplement he has to drink the nasty amino acid formula and if he doesn't and NG tube will be ordered. His next scope is August 9th. Hoping his counts are 0 or least down. If not then he will have to go completely elemental and the NG tube is a reality.

Lili is doing okay. I'm still trying to get her into the motility clinic in San Francisco. So frustrating.

But I've got my smiles to myself and it feels good. I have a place to focus this energy that I have and hopefully contribute to a cure.

Friday, June 10, 2011

Ups and Downs

Life is ever changing in our household it seems. Lili's diagnosis of Gastroparesis leaves me with yet another medical issue to learn about. Unfortunately, I haven't dedicated the time and attention to Lili's issues like I have to Jacob's. Not that I don't worry about her, I worry about her every day. But how much worry can you expend in 24 hours? Right now Lili's symptoms are minimal. She is eating, a little. Her stomach hurts and she is nauseated. She is on medication which seems to help a little. I took her off her ADD medication because it suppresses her already limited appetite. The drawback is that she has to work extra hard in school to focus. But school is out for the summer so I have 2 months to figure this out. I've put in a request for her to be seen at the motility clinic at California Pacific Medical Center. So far no word. And so, for now, her GP is in my mind and I ask her how she is but it's not on my radar.

Jacob hasn't been well and as always, his issues seems to take up much of my time and energy. I had surgery 2 weeks ago which left me at the mercy of my mom and husband. Jacob's stomach pain grew to unbearable levels. Was it the buffalo hot dogs? Maybe the strawberries? Even though the allergy testing came back negative, could it be potatoes or corn? The decision was made today to eliminate ALL food from his diet and put him on an elemental formula. The purpose of the drink, to keep him alive while we reset his system. Yes, exactly, we have to reset his system. Start from the beginning. No food. Only the basic nutrients that his body requires to maintain vital life functions. We wait until his eosinophil count is 0 and then we reboot. One at a time we add back a food. Hopefully, his body accepts each food as it comes. In this way, we find the offending foods, instead of pointing fingers in the dark. The drawback, because there always is one, the elemental formula is horrible. No child, no adult, would willingly drink it. So in most cases a NG tube is needed to keep him/her alive, to make sure they are getting enough nutrition. And the possibility, no reality, that Jacob will need to have an NG tube is terrifying.

In 2 weeks we are heading out to Maui. I had made extraordinary efforts to make sure our hotel would meet Jacob's dietary restrictions. They were more than accommodating. But now we only need to worry about getting his powdered formula past TSA. I'm looking forward to the trip though. A chance to sit and watch the kids be kids. To play on the beach and swim in the pool. To swim with the turtles and learn about their pacific island cousins, the native people of Hawaii. Did I mention we are from Fiji? I can't wait to see them tan to a beautiful brown with that white little butt, while their dad burns to a crisp lobster red. My sister-in-law and I have hired a professional photographer to take family pictures as a thank you to my parents for all they do. I'm looking forward to seeing their beautiful faces captured in time.

Life changes direction, without notice, without permission. I'm learning to adjust. I'm learning that change is no longer something I can control. I can only control how we accept the changes and how we accept those changes into our lives. Do we fight it, hate it, resent it or do we embrace it, find the good in it, and find a place for it? I think we are learning. It's a hard lesson but one that will stay with us a lifetime.

Wednesday, June 1, 2011

My First Video

I had surgery a few days ago. So while sitting on my parent's couch, trying to not go stir crazy, I put this video together.

The Maupin's

The Maupin's