Lots to Catch Up On

Wow it's been a week or so give or take....My computer was getting fixed bc the hard drive crashed and was not repairable so we had to have it completely replaced...Thank God we got the extended warrenty. So onto the going on's of this week.....

Well belle had what was supposed to be her follow up. Well what a cluster freak that was....We get there on time and check in...Are lead back to a room and left there....we kept seeing people come and go and were getting quite annoyed that we weren't being seen. We finally went and asked what the hold up was since we had been waiting an hour...Come to find out they can't find her doc. So they start to page him and what not. 30 minutes later we're told our appointment should have been canceled and was canceled in the system but no one called to inform us. So they got another GI doc to come and see Belle. Almost 2 HOURS after our initial appt time. They did give us free parking though so that was nice.

On to her appt....Nothing but good news. We're allowed to start giving her small amounts of sugar again. If we anticipate that she's going to get a lot of sugar in a meal or over the course of the day we can up the amount of meds we give her. It's what her body should be making so she won't OD on it ;-) Belle hasn't gained any weight since April but the doc said that's ok and her body is just adjusting. We don't have to go back for a year and the new doc told us she'd take belle's case since belle's doc is moving. Oh and in 9 months we get to challenge Belle first with a tsp of soy and then if she can handle that a month later milk.

So we've reintroduced natural sugar into belle's diet. Although I think the first day I think we over did it. She didn't sleep well at all that night. She went and slept in the hall and any time derrick tried to put her back to bed she scream and cry until she was back on the floor. The next day she was a grump until she took a 3 hour nap. Belle can also drink her special milk again. She's getting the vitamin's she needs and the calcium so I'm not having to worry about trying to get her to take nasty tasting vitamins. And she can have tylonal again. That was my biggest worry. How to bring down a fever w/o meds.

We are all still adjusting to this new lifestyle. But I think we're surviving. Less sugar is good for all of us, and only trying to stick to the natrual sugar is better for us anyway.

Acceptance

I've never thought about that word as much as I have when it comes to Belle. Since she's only three i'm the one that worries about wheather she will be accepted into a peer group. I worry about the future of her being accepted by others when she figures out she's "different". We've learned to accept that God made Belle beautiful and special. At times it feels like the mountain is too tall and overwhelming. It feels like we'll never reach a platau. But Belle has shown me that she can accept the hand that God has dealt her and go head on into life. Yes, at times her feelings of being different do get to her. She feels life is unfair at times and will throw her tantrums, but for the most part Belle accepts life and forges on.

Acceptance today has a totally different meaning for Belle. She was accepted into the state preschool. I find it very convienent her acceptance letter was sent the day after I called and raised my issues with them. She was so proud to get her letter. She toted it around the house for a good hour. You would have thought it was her college acceptance letter. She keeps telling us she's going to "big girl" school next year. As much as I fear this transistion for her I also know that it's the next step that needs to be taken. I can't shelter her under an umbrella for the rest of her life. I cannot fear the unknown because if I do Belle will learn that to life there is a scary side. I want her to live her childhood with innocense. I want her to embrace what lies ahead of her and learn from it. She will also teach other students that every one is different. That she can do everything they can, she just has to be careful with what she eats. She'll teach them that healthy things are good to eat too. She'll enjoy the fun things when she can and learn when she's had enough. I have full confidence that my baby girl will do well even though I am sad she's growing up.

Belle's Story

Seeing as I'm always talking about Belle I thought I would give you her story so far and how this journey began.....

Even while pregnant with Belle she was trouble ;-) I fell and broke my ankle at 29 weeks and at 35 weeks Belle decided to grace us with her presence. She was born November 24, 2006 at 6lbs 4 oz and 19.5 inches. She came out screaming and all the doc's were impressed that she didn't need to go to the NICU. SHe stayed in room with me and went home 3 days later.

Belle was a colicy baby but was growing and doing well with feedings. Her eczama did start to develop and it covered her when she was a few months old. We were told she might be allergic to milk if it didn't clear up with cream. Well it cleared up and so that reason was tossed out the window. The year continued and she began eating solids and enjoying food. At 1 year I began to introduce cow's milk to her. She was given whole milk soon after her first birthday. that is when the journey began. At 13 months I had Belle at the doctors office almost weekly. She was having upwards of 14 dirty diapers a day. Not small ones but full dirty diapers. They tested her for milk allergy with a blood test and it came back normal so she must be ok. But she kept getting worse. By 14months she looked horrible. Eyes sunken in. Didn't want to eat and all over tired. It all came to a head when one morning in January of 2008 Belle got down from her high chair and began to scream in pain. I couldn't take doctors excuses anymore so I called to see a ped that morning. The ped told me I was being an overprotective mommy and it was just toddler diareah. I insited on getting a referal to a GI doc and the scheduler in the office was able to get her one that afternoon. We got to children's and were put in a room to wait. Her doctor came in and took one look at her and said to take her immediately to the ER. So off to the ER we went. Belle was severely dehydrated and the attempt to get in IV in her little body was a hard process. By midnight that night we were told they could either admit her for observation or she could go home because she had started to get rehydrated. I insisted on them admitting her and so our 2 week stay began. The following day Belle became dehydrated on IV fluids. That sent up a red flag to everyone. for the first few days she was tested for all sorts of GI bugs. She was quarenteened to her room. Finally when all that came back normal we had to do a scope, both upper and lower scopes. Her intestines were extremely inflamed at that point and there was a patch that was abnormal. But nothing conclusive. After 2 weeks we were sent home with the diagnosis that she had a milk and soy allergy and we needed to rescope in a few months. She was also sent home with an ng tube for 6 weeks and weight checks weekly.

Belle slowly started to get better and she was a real trooper when mommy had to change her ng tube weekly. By this point Derrick got to come home from deployment and help with the care of belle. We went back for her rescope and again there were abnormalities but nothing conclusive. So we began just living our everyday lives. She started acting like a normal kid again and we thought just the diet change was going to fix her. She started to have periods of time where the diareah would return and she wouldn't feel well but we'd just brush it off and chalk it up to maybe she got some cross contamination. Her doctor said she was growing great and she just might have periods of time when her intestines would just flare. But he wanted the next time she was having a major flare up to return.

Fast forward to this year. Belle started complaining almost daily of her tummy hurting. She was going to the bathroom 4-5 times a day just to poop. At first I thought maybe a tummy bug....then maybe she's just having a small episode. But 2 weeks turned into a month a month turned into 2 and I called her GI doc. Had to wait another month just to be seen bc of his schedule. When we finally got in he decided it was time for another scope. We were all ready for it and the night before belle spiked a fever and started vomiting so we had to reschedule for the following week. The plus was that we got to reschedule it for the closer out patient clinic near us.

She went in for her scope and did great. Well except coming out. She was a screaming monster. She does not do well coming off of anistesia. The doc came out to talk to us (not her normal doc) and told us everything "looked normal" and maybe these episodes were just her "normal". Honestly I wanted to scream at her that diareah is NOT "normal" for ANYONE. But I held my tounge.

We recieved the results a few weeks later. Her GI doc told us that her enzyme results came back abnormal. She has what is called congenital sucrase-isomaltase deficiency (CSID). We had to remove all sugar from her diet and give her an extremely expensive enzyme suppliment. The hunt for food has been extremely difficult but we are surviving. She's been a super trooper through all of this. So our journey continues and hopefully we'll be able to give her some sugar in the near future. Just how much we're not sure....

Our First Adventure In Dining Out

Since finding out Belle had any sort of allergey dinning out has always been an adventure. Usually we have to send the server back and forth between us and the kitchen checking for ingredients. For the most part the servers have been very helpful. Heck even some managers double check for us to make sure all is prepared safely for Belle. Well with the new revolation of Belle's inablity to digest sugars going out to dinner seemed like an even bigger task than before. Well last night we had to run errands once derrick got home and we had to feed everyone. We had a coupon for a free kids meal at applebee's so we decided that would be our destination. We packed Belle a dinner of all her safe food and put it in her princess lunchbox. She thought it was cool to take her own dinner out to eat wth her. I honestly was a little worried that the restaurant would tell us we couldn't bring her food but I was willing to take the risk. I can't keep her holed up in the house the rest of her childhood. We ran all the errands that we had and headed to dinner. She took her lunchbox in and once we sat down she wanted to eat. we had to explain that she needed to wait for the rest of the family. When it was time to order (after a 20 min wait at the table) I ordered for Jamison and I and then derrick ordered his stuff. The waitress asked what about belle and we told her that she has a food allergy that we couldn't expect the restaurant to accomidate so we brought her food. Surprisingly the waitress was ok with it. The rest of dinner went off with a hitch. I think all my worry was for nothing. Restaurants want their patrons to be happy and have a good experience and if that means a child brings in their own food then they are ok with it. Besides the bad service the experience as a whole was good...Looks like we can go out with belle after all.

Are You KIDDING Me

So bc of belle's disability with food the state preschool we've sent J to for the last 2 years is telling us that it may not be a good idea for Izabelle to attend bc they cannot provide food for her. The state guidlines is that no outside food is allowed. And I get that. I really do. A mom last year brought in snikers for the kids and J can't have nuts so I was annoyed. BUT they are discriminating against Belle bc she can't eat the cafeteria food. The doctor even wrote a note saying why Belle cannot eat the food and they told me they still cannot make an exception. She wants to see if we qualify for in home services but she is not to positive bc of our income. She thinks we make too much. I'm BEYOND pissed. Belle just wants to be with other kids. She WANTS to go to school. They even told me they are not full yet so if she didn't have this problem then she would probably get in. I get that they want to keep everyone safe. but when food is like posion to a child I think exceptions need to be made. It's one thing if a child is just refusing to eat the food offered it's another if the child physically can't eat the food given.

I Do Have Other Children

As special as Belle is I do have 2 boys. Jamison is 5 and Easton is 4 1/2 months. Belle's illness does not just effect her but the boys as well...More so Jamison right now than Easton. He's such a trooper but I can tell he's getting super annoyed at his sister's new diet. He's also uber protective of her. If mommy and daddy are not around he will take charge and make sure she does not eat was she isn't allowed to. But with this new diet all the "fun" things we used to have in the house are gone and no more pancake saturday mornings because we don't want Izabelle to feel left out. No more trips to the ice cream store (they had sorbet for belle) because Belle would be excluded. He keeps asking if we can leave her at home so he can get what he wants. I try to sneak him treats when I can and still give him what he likes but with the tantrums we're already experiencing with belle we try to avoid them when we can. So Jamison is having to deal with not getting in his opinion enough attention. Baby Easton is usually attached to mommy and if easton isn't Belle is usually having a meltdown. Daddy's been working super hard lately so he's not around to absorb the attention needed by Jamison...The poor kid is getting the butt end of the stick right now. I wish I could divide myself so I could make jamison feel like the special boy that he is. I"m praying that we quickley get over this first hump with belle so that we can figure out how to integrate Jamison into the whole scenario. He's my lil man. He takes charge of the kids when he feels he needs to. He's a huge helper to mommy and daddy and he's got the sweetest heart that I hope is never lost. Jamison is a truly special little boy!

High Fructose Corn Syrup I Loath You

So today I went to the grocery store in search of more foods for Belle....I left defeated. The first place I stopped was the diebetic isle...They are sure to have something fun for Belle...Not so much. It either had sorbitol or splenda. Neither of which Belle is able to process. So after defeat in that section I went to go find her some bread that she can have with dinner tonight since we're having speghetti and we make our own garlic bread. After all the types of flour in the ingredients the next one listed is high fructose corn syrup....Are you kidding me. What is the need for this in the BREAD....It's just bread. It doesn't need to be sweetend...Yes as American's we have been brought up on sugar and not surprisingly the food companies have picked up on that small fact. Everything must be sweet in order for us to eat it....This is just getting ridiculous. I can't go to the fresh fruit/veggie aile and get her good stuff there and I can't find junk w/o some sort of sugar. I'm going completely mad and feel like a horrible mother. Lately Belle's diet has consited of diet lemonaid, crackers, tasetless hot dogs and whatever we can manipulate for dinner. She's always saying she is hungry and I feel like a horrible mother. I feel like I'm starving my child. I know I'm not and I know I'm doing my best to provide for her but when she still is omplaining of a tummy ache and just wants to have normal food all I want to do is curl up in a ball and cry. I understand she is frustrated. I understand she just wants to yell at me because she wants something with flavor. But I just can't give it to her. This diet goes against everything most parents try to get their kids to eat. For the past year Derrick and Ihave been encouraging our kids to make smart choices. Choose carrots and raisins over gummies and cookies. Heck some mornings belle didn't want "breakfast food" she would just walk around with a bag of carrots. I was proud that my kids were making smart choices. And then I have to turn around and tell belle that basically all those "good" foods are making you sick. They hurt your tummy and make you have to use the bathroom. She keeps telling me that if she says she's better does that mean she can eat the good food and unfortunately for now I have to tell her no. Everything I look at...Healthy or unhealthy has high fructose corn syrup in it...If we're trying to now become a healthier nation why not pick up on that trend and take the stupid stuff out. It serves no real purpose. I just wish it wasn't defeating me.

We've Got Amazing Friends....

So this has been a trying week for Izabelle. She's had to listen to us say NO way more times than I can count. She's had multiple meltdowns due to being frustrated with mommy and daddy. She's doing as best as she can for a 3 year old. I still get cuddles and kisses and she's starting to understand that sugar hurts her tummy. She'll even tell you she can't have sugar now. Her diet has gone from restricted to impossible. At least she loves what we do give her. She's living on hot dogs, cracker, cherrios and sugar free lemonaide. But yesterday she got an amazing present. One of our friends dropped of a gift for Belle. When we went to open it we found that inside the bag was an air popper for popcorn and a fun bucket and gourmet popcorn. Immediately belle wanted to make her own popcorn and watch a movie. How could a mommy say no to that. We brought up her stool and she helped me pour in the kernals. We watched the popcorn pop and she even shared it with Jamison. It's such a simple present but it totally made her day. She got to enjoy a treat w/o having to worry about feeling sick. Today I'll be popping some popcorn as our treat for the park. All will enjoy and she won't feel left out.

Thank God For Insurance

Today we received Belle's enzymes in the mail. Included was the invoice. Sticker shock is an understatment. For just a months supply it cost 5661.89....I had to pick my jaw up off the ground. After the shock I thanked God that I actually have insurance. I'm thankful that Derrick has a steady job and a steady paycheck. And yes we have to sacrafice having him around for months at a time but if that is the sacrafice that is needed to keep Belle happy then we'll do it. The kids may not understand the whys to why daddy has to go away but to able to keep all our children cared for it's a small price to pay.

Today was yet another day of tantrums and meltdowns. All Izabelle wanted was some tomatoes and her "special" milk. I had to keep saying no. Even offering alternatives didn't work today. I'm so worn out from all the "fighting". It breaks my heart that I can't give her what she wants. All these healthy things that we have been encouraging for her to eat over the past few years are now in a way poision. I'm praying that the addition of this enzyme will help ease the problem. I pray that she can enjoy some of what she used to. Eating out it no longer an option. At least not right now. Which is probably better for our wallets anyway. Taking her to birthday parties and events just got 10 times more challanging. I want Belle to be "normal" but now i know that will not be the case for her.I just pray God provides the guidence derrick and I will need through these beginning phases so that we can give belle the best possible childhood and start to life.

A Challenging Day

So today is our first day of no sugar for belle. It was a day full of tantrums and tears. The frist melt down happened when I could only give belle 1/2 a box of her milk (per doc bc there is still some sugar). She wanted the whole box and no sippy cup, thus when told "no" her tantrum ensued. When that foot stomping was done she asked for a banana. I tried to offer an alternative but alas I was met by the tears and screaming again. After dropping daddy off at work mommy needed coffee. When I asked belle if she would like a water she was adament with saying no so I did not get her one. When we drove away from Starbucks she started screaming for water. More tears and screaming. By mid morning it was time for our playdate...Wonderful I thought. She'll be with other kids and it'll keep her mind off of the new "diet". It worked for a while but then it was lunch time and I foudn hotdogs (her fav) w/o sugar. But it wasn't good enough. She wanted popcorn (flavored like the other kids) and pretzels. Again told no and yet another tantrum. But my wonderful friend who was hosting the playdate got out her airpopper and made belle some fresh popcorn. This made belle happy and content for the time. And before we left I had to say no again to watermellon.

It's been a rough day. I feel like a failing mother because I can't give my child what she wants or needs. No has been the word of the day and I feel horrible. I want my child to have what she wants. I want her to eat fruits and veggies. I want her to feel included with her friends. I know we'll get the hang of this diet. I know we'll overcome it. And I know in the future she will be able to handle small amounts of sugar. But at the starting line it always feels like it's going to be an uphill battle. So today I ask God for patience, understanding, and peace.

An Overwhelming Morning...

So this morning we had Belle's nutrition appointment. We were explained her deficency and given a list of what she can eat...It all fits on 1 page...For the first 2-3 weeks we have to do complete elimination of glucose and fructose aund sucrose. So tomorrow we are starting her diet so that derrick and I can go through what we have in our cupboards and figure out what she can have and then go to the store for other needed items. So basically the run down of this disorder is that there are 2 molocules in sucrose and when it reaches the intestines the enzyme breaks it into 2 seperate molocules and sends it to the parts of the body that needs the energy. Well in Belles case the molocule never splits and then the body gets confused as to what it is and eliminates it....It causes her tummy to hurt and have tummy troubles. So the game plan for now is to completely elminate sugar from her diet. It's to help her body heal and to give us a fresh baseline. When the baseline is reached (about 2-3 weeks) we'll start to slowly introduce sugar back in. We'll first try something like a few grapes and watch how her body responds. She will have to take a replacement enzyme to help with the digestion. She will always have a limit though to how much she can handle...The oral replacement is by no means a cure. She has a 50/50 shot of growing out of it. But no one sounds to hopeful about that :-( On a good note though we may be able to reintroduce milk/soy. it is a possiblity that this deficency was masked by the milk and soy. So we will challenge her sometime later this year if we can get her enzymes under control.

So please continue to pray for guidence from the doctors. And that the feeling of being overwhelmed that I am feeling will be calmed. Please pray that belle does out grow this. Please pray that those around us will understand and help us through this journey.