Waiting On Results Is Never Fun

Since it's been a while I'll give a little background. We took Easton for his 15 month check up at the beginning of May, and I brought up to his ped that he has been having low grade fevers every few days for over a month. There isn't a reason for them, at least no outward reason, no runny nose, no cough, no ear drainage (he has tubes). So his doctor decided to hold off on his shots and run some blood work. I wasn't too worried and figured I would get a call back that all was normal and bring in back in for his shots. Well a week later his doctor calls and said there was a small abnormality with his liver enzymes and he is slightly anemic. Now it's time to run more in depth blood tests. OK, sure, no problem I'll take him to get more blood drawn. That was over two weeks ago. I looked up online how long the tests can take and of course one of them can take 2-3 weeks. I know they are being thorough but I HATE waiting. Now amongst all that yesterday Easton FINALLY had a scope done to check all his GI problems. Everything by sight looks "normal". That I wasn't surprised with. Everything looked "normal" with Belle too. At least this time they went in knowing what to test for. They are doing all the tests up front so that we won't have to continue putting him under and scoping him trying to figure out what is wrong. It made me feel bad about Belle having to go through all of that. I know eventually it gave us an answer but I HATE that it took them so long because they didn't run all the tests the first time.
Yesterday was a crazy day we got a call at 6am but we missed the call and I noticed the missed call at 730 I called the surgical center back and they told us our surgery had been moved to the main hospital. The only problem with this is that we weren't going to be able to get belle to school. So Belle had to tag along for the day and we had to get through downtown traffic at rush hour, and be there essentially in 1 hour. Luckily my brother in law was able to get Jamison off to school. We got there and checked in and put in a preop room and then sat, and sat and sat....Poor E was so tired and hungry and thirsty. He was a trooper though. Smiling and cuddling and playing with his sister. Finally 90 min AFTER his surgery was SUPPOSED to start he went back....he did great. It took 20 min and then another 30 min for him to wake up. He hung out in the recovery waking up and flirting the nurses. The first sippy he got he guzzled it down. He did amazing and I'm so proud of bubs! Now we play the waiting game...On a side note the surgeon was Belle's GI doc and she proved why we don't like her even more...she didn't recognize us at all (we've met a few times) and she didn't recognize belle. I realize that we're not patients  every month but you work with kids...Her previous GI doc knew us well and knew her too....wow it was just awkward.

 

Time to Be A Detective

Yup it's that time again....Time for me to get out my magnafying glass and start looking. I went to give Belle a shower and her whole back side from the neck down is covered in her eczama, huge patches of it and I'm not sure why. So now she is not allowed any more banana's and the restricted diet is to begin again. I HATE doing this to her. She loves experiencing new food. Heck she even wanted to try guacamolie and loved it. I love that my little girl has taste buds that are willing to try anything. What I hate is what food does to her body. She hasn't been complaining about the itching but I know that it has to be bothering her. How can it not. I think it's time for a call into the docs. I at least want to try and get her on an allergy med for now so that at least we can keep the itching at bay w/o the side effects of being tired all the time. Benedryl makes her super sleepy and grumpy. I do not want to subject her teachers to that daily. So at least for tomorrow I think it's a day home with mommy and benedryl and hopefully a trip to the doc to get a non drowsy med to keep her comfortable. I know she did have a fruit roll up tonight and honestly I don't remember the last time she had one. Spring also seems to be a time where her body flares. I don't know the rhyme or reason behind it but it does...so here we go again. It may be snowing out but Belle's body doesn't know it and her poor skin is raging...

The Trial is O V E R

I can no longer torture Easton or daddy. I know Easton enjoyed his new foods (yogart, cheese, and real butter and milk) but after 2 days his body has had enough. He was up all night with Derrick last night he just couldn't get comfortable. He'd moan and whine or just out right cry. He started to refuse food today and just want fluids. I guess easier for his little tummy. Also when he finally did poop it was the tell tale white marble funky smelling poop that floats that if it sticks to ya burns your skin.....So he was smart and brought mommy a diaper...smart kid if you ask me...he did not want that on him....so back to hypoallergenic bottles and "safe" food. We gave it a try but we're done with sleepless nights and an uncomfortable kid no matter what the doc says! Mommy knows best!

Tomorrow It Begins

What begins you may ask....Easton is going to be treated like a regular kid...well at least when it comes to his diet...he's going to eat whatever he wants. I'm going to let him endulge. At least as much as a 1 year old can. I'm not going to read lables. I'm not going to worry about what I'm feeding him I'm just going to let him have it. Let's see how he does. Granted if it's overkill and his body starts to completely rebel I'm going to reign it in and stop but I'm going to let him have fun...Maybe let him have his first bite of real ice cream or maybe a piece of cake. Maybe some real cheese or milk. The poor kid hasn't had any of this.... So beings  my experiment to see how overprotective I am actually being....I'll keep you all posted on my journey.

Only As A Mom Can You

Talk about POOP...yup I said it....I said POOP :O Yesterday as I was perusing facebook during naptime my chat popped up and a good friend of mine was asking how things were going...one of her first questions was how was Easton's poop...we both laughed and made the comment that only mom's can hold this type of conversations. We have gone from the latest style fashions to what does my kids poop look like. I just have to sit back and laugh. So now as I'm on my new crusade of documented of what Easton is eating, drinking, and pooping Derrick is giving me funny looks. Heck I'm giving myself mental funny looks. So last night I had Derrick document what Easton was eating for dinner. No problem. He didn't question me no funny looks. Then came the poop. Easton had one nasty diaper and it stunk. If pictures smelled this picture would have cleared a room. But as derrick was getting ready to take the diaper to wash it I told him he needed to take a picture...Here came the look. I think it was a cross between surprise and disgust, but I'm going to do all I can to make sure I have every thing documented for the doctors...I suck at writing it all down in a notebook so taking pics and writing on my blog is just going to have to be my documentation. Plus it is hard to put into words what poop looks like. It's easier just to take a picture of it, and as far as ingredients who wants to copy all those long words...I'd rather just take a picture and that be the end of it.

Since we're on the topic of poop I've never been happier to have a cloth diapered baby...Why didn't I do this on my other 2. This would have made life (especially with Iz) SO much easier. If he has to go through 10 diapers a day I just throw them in the wash and that's ok. I spent so much money on Iz when she was going through this. It doesn't take any time at all. Is it gross to spray the diapers yes but does it save me money and time running to the store getting diapers YES...Oh and he looks oh so cute in them. Granted when he is having watery diapers he's got to be in disposables bc of the stench. But other than that I LOVE my cloth diapers.

I'm Going to Become the Crazy Mom

So the doc appointment yesterday felt like I was pounding my head against a wall again...It felt like Belle all over again....Seriously people I've done this once before...Been there done that really don't want to attend the after party again...So I brought up all my concerns. Stated all his problems, yada yada yada and yet I'm still the overprotective too proactive mommy...WHAT?! First thing that pissed me off was that as I was standing in the hallway waiting to Easton weighed I overheard the MA's talking about how the infant scales are not correctly callobrated because they are moved around constantly because of all the transplants on certain days...Ummm HELLO in GI weight is IMPORTANT....UGH...THEN she tells me they called the WRONG branch of Easton's doctors office so they don't have his growth chart so they don't know why his doctor is so concerned bc on when he was last at the ENT he looks fine. (insert eyeroll) So first your scales aren't correct and 2 the scales you are going off aren't even the same ones because they are at 2 seperate offices with 2 seperate departments. Ummmmm yeah...whereas the growth chart that has me and his pediatrician concerned is off of 1 of 2 scales in the SAME office that are regularly checked and he's seen there at least once a month...Hmmmm wonder which growth chart I'm going to go off of...I saw for my self his growth chart. I know how to look at a chart as does his doctor who has been looking at them for oh more years then this GI doc has been alive....AHHHHHHH

Anywho...onto my task that I'm giving myself for the month...I'm going to be a photo journalist for the month and the blog is going to be my outlet...well kind of...I'll spare you the gross photos. SO for the next month I will be writing down everything and photographing everything that he eats and poops. The GI doc said he should eat a normal diet...there's no way that he's like belle...UMMM what?! OK I'll prove you wrong...and if you know me you know I like to prove you wrong...Granted I won't put him in danger and I won't make him really sick but I'm going to prove that I know my children. So here I will be able to vent and   talk and cheer and cry....So away we go.....

Reflections

This really isn't about me but life in general...You think life is going smoothly and God throws in curve balls. Whether they are personal or worldwide. Yesterday/today God showed the world his almighty power. Japan was hit with a horrific Earthquake and Tsunami. Once again in my life I am left feeling hopeless and out of control. First thing I hear when I wake up this morning from Derrick is "Lindsey email Debra find out if they are ok." I hadn't turned on the news and my heart sank. Debra is a wonderful woman of God and a wonderful friend. Immediately I turned on the news and opened my laptop to email her. Demanding her to check in with me. Oh how I was relieved that she was quick to respond. I was afraid for her. I wanted to make her feel better. I just wanted to wrap my arms around her like a warm blanket and take all her fears away and drown out all the sirens with beautiful music. I still feel like there isn't much a can do. I'm just a friend on the other side of the world on a computer. I just want to sweep in with jet and take all our friends and their families but I have to sit and wait and know that the US military will do their jobs and take care of them.

I'm also glued to the TV making sure that nothing more is happening and keeping tabs on Japan and the west coast. I am running into the problem of shielding my older children though. This morning I had to send Jamison to my room to watch a movie so that I could watch Fox News as to not scare him because he knew his best friends grand parents live in Hawaii. Now this evening when I was watching the World News I had to send them to color so that the talk of earthquakes in California would not give them nightmares of the place they would soon live. I know they will have to live through earthquakes. They already have. They don't remember it and at this point that is a blessing. They will have to do earthquake drills and it will become a way of life, just like if that continued to live here they would have to do tornado drills. Weather happens and you have to be prepared. Right now I just want to keep them shielded from the extremes.

I continue to pray for those effected by these recent tragic events. May God wrap his arms around the scared and grieving and place his healing hand upon the injured. May the people of the Japan rise from the ashes of the ruble and rebuild.

I Hate This

I feel so powerless, out of control. I'm emotionally back to a place I don't want to be. Back to a place i vowed I would never return to. It took me a year and a half after Belle's ordeal to feel better and now with in 24 hours I'm back to that place. A place of worry and helplessness. I can't stand it. I hate feeling like this. I don't have a magic pill or liquid medicine. I fear he'll need an NG tube or even worse have to stay overnight in the hospital. I hate having to think he'll get poked and prodded with needles. I'll have to watch another child stump doctors with a list of symptoms with unknown causes. We'll get yes we understand he's losing weight and yes his GI tract is affected BUT we don't know why so we'll give you the best guess why and hope he gets better...I feel like a rug has yet again been yanked out from under me. God said life was going too smoothly so I'm going to throw some more curve balls at you! I'm tired of curve balls. I"m tired of having to be the strong mommy. I'm tired of having to watch my children go through test after test with no "real" answers. I LOVE my children they are blessings and yes they could have worse things wrong with them, but this is so emotionally draining. I'm fearing moving because I don't know the doctors where I'm moving. I fear derrick being gone. I fear the unknown. I know I will have just as amazing support system. I just want to make my kids better. I want to make the 100%. I want them to eat what the want...Have an ice cream cone. Eat a piece a cake at a birthday party...Eat a fresh piece of fruit from a farmers market w/o running to the bathroom. I want my kids to be able to go to a restaurant  and order what ever they want with out having to asking a million questions of the waiter. I want to be able to take my kids to the movies and get them goodies and popcorn. Food is supposed to be fun and nurishing but to 2 of my 3 kids it's the enemy. I just feel helpless. I'm ready for this week to be over so we can start this journey again with easton and so that we can get him on a path to healing.

It's Happening Again

I don't know if I can do this again. Easton is approaching the trouble age. My anxiety is increasing. But I'm doing everything right. He's on a hypoallergenic formula. He's not getting milk or soy. His sugar intake is minimal. His foods are healthy. What more can I do. I'm doing everything RIGHT and he is still getting sick. His weight is starting to drop from his growth chart. He was in a nice little cluster there for a while. We could explain why he wasn't gaining as quickly as other kids. For 6 months he was having constant ear/sinus infections. He was gaining just slowly, but consistently growing. He is getting taller so something is going right. But his weight is going no where quickly. At his 12 month appointment I was so excited. He was 20lbs and 14oz. He was getting up there. It looked like we were on our way up. He was over the weight hump. My heart dropped when he got weighed today and he was 20lbs 4 oz. When his doctor looked at his growth chart his dot was no longer in his little cluster but lonely and far below. My nerves are shot I find myself going back to an emotional place I thought I would never have to go again. I have tried to control this situation. I did everything I knew how to do. I've controled his diet so well. the poor kid has never tasted ice cream or gotten to eat a real piece of cake. He is probably the healthiest 13 month old around...He gets excited for veggies....I am at a loss of what else to do. I've done everything I know how to do. I've controled everything I can. But it's not enough. My child is still sick. WHY? WHY? WHY?

I Got to Be A Kid Again

Oh how I love the excuse to be a kid again. Today Belle and I got to do a girls day out. I didn't tell her what we were doing I just told her we were going to the mall. We went to Ross Park Mall and went to the Disney store. There I let her pick out 2 new princess shirts and some fun jewelry. We also got her older brother some Phineus and Ferb stuff. We also preordered our copy of Tangled. I think I'm more excited for it than she is. Although, I know Jamison is super excited to finally get to see it. Go figure my boy wants to see a princess movie, but who am I to stiffle imagination. One day he's no longer going to like disney and I'm going to have to relish in memories of the little boy who wanted to see Tangled. We walked around the mall somewhat and I let her run off some energy at the playground. I then packed her up in the car and started down towards Pittsburgh. I finally told her where we were going and her face lit up light it was Christmas morning. She talked about all the Princesses she would see. We got to our seats and she kept telling me how much she loved me and how excited she was. He face lit up as the princesses started to skate out and mickey and minnie came out. The only downer was the people in front of us who had too many people for not enough seats...5 seats and 6 people...ummm you do the math...AND they were super loud yelling at each other...it got to the point I had to put Belle on my lap so she could see. But all in all I had the most amazing time with Belle. It's very rare that I get to spend that quality time with her. I get to see who she is and really get to focus on her. There are far less melt downs and far less tantrums. It's a calmer belle. It's a genteler belle. It's a sweet Belle. It's probably the Belle that most people get to see because when she is with her friends she's not fighting for attention from her brothers. I love Belle and I can't wait to watch her grow up and watch her grow into the amazing young woman I know she will be!

So It's Been FOREVER

So it's been forever and well life has taken over, but God has handed us some curve balls. Izabelle has been thriving in preschool. Her teacher has been amazing at handeling her "allergy". She monitors what Belle eats and if she feels that there has been too much sugar in a day she modify's Belle's snacks and lunch. Belle also has been amazing. She is learning what sugar does to her body. There have been many days that Belle comes home and tells me that her tummy isn't feeling very well and that she doesn't want any more sugar and she wants a sugar free day for the following day. She has had days where she rebels and binges on sugar but she learns very quickly that it hurts and it makes her sick. We have also learned that Easton may be following in his sisters footsteps. It started with him not being able to tolerating milk and soy. He was put on a hypoallergenic formula at 6 1/2 months. He has been tolerating that well. We have tried bites of yogart once a month but with each try he gets hives on his face so we are pretty sure that he too will be unable to eat it. We have been refered to a GI specialest for Easton so that we can confirm what we pretty much already know. Easton is thriving though. He took his first steps at the beginning of February. Now he's toddling around and getting into EVERYTHING. He has bruises everywhere from falling but I know those will heal and he will soon be a pro at walking and my baby will no longer be a baby. Jamison turns 6 on Saturday and I'm so proud of him. I can't believe he's already 6 and over half way through kindergarten. He's a bright young boy and he's everything I could ask for. He makes his mommy proud.

Early this week we were informed by the navy we will be heading back to San Diego. Derrick will be heading back to Carrier life....Our families are very sad to see us go because we will be across the country again but I think the navy chose this for use because we will be close to one of the major naval hospitals and our children are considered Cat 3 EFM's. Derrick has to go to school for the first 3 months that we are there so we won't have to live ship life right away and the ship is deployed now so we won't face a deployment right away. God is really looking out for us.

Gearing Up For School

So this week has been quite hectic. Jamison started kindergarten and it's been early mornings and a lonely little girl. About an hour after Jamison leaves for school the questions of when will he be home starts. For as much fighting that the two of them do she really misses her brother when he's not here. She is getting good a quiet play by herself and trying to entertain Easton. So all week we've been collecting up all her special medical instructions and talking to doctors. I can't believe my little girl is going to all day preK. She's so excited and I know it'll be good for both her and I. She has been challenging lately and I think she just needs so daily structure. She loves doing school stuff with brother so I know she'll enjoy school. It's finally her turn and she's excited. Although she doesn't understand why brother gets a bus ride and she doesnt. I wish she could get a bus ride, just for fun, but alas she probably won't get a school bus ride for many years. Once we move who knows if busses will be provided or if she'll even need one. She got a new backpack for school and wears it around the house proudly. I know most days she won't need it at school but she feels like such a big girl getting to finally get one of her own. With her going to school it brings many fears. Will she be able to enjoy lunch and snack and all that. Will she get sick and have an accident and be completely embarrassed. Will she get to the bathroom quick enough so that she doesn't have an accident. Will the other kids accept her even with her strange food problems. Will they accept her in general. She's got a strong personality and I'm not sure how other kids will do with her. She did do fine at MMO but she also knew those kids from infancy. I know she needs to grow up and do things on her own but I've been able to keep her pretty sheltered with all her food stuff. I'm really hoping that all my fears are short lived and she has an amazing experince like Jamison had.

daredevil

Forgot To Add Yesterday

While at the doctors for Easton yesterday I did bring up Belle's sleep walking to him. He gave her a look over. Although she was in her "grumpy" mood and wasn't following directions. He wanted me to give a call into her GI docs. He suspects she is having refulx at night and because of all her other GI problems he wants them to take a look at her. If GI and meds don't help he wants her to go in for a sleep study. Seeing as we can't pin down when exactly she is waking up we need to figure it out and help her sleep. I'm just hoping that school will help tire her out. I just don't know what to do with her. I"m hoping the structer of school will also help. I think it will be good for all of us....

Onto a cute story of belle...A few weekends ago we went to a family reunion in Charolette NC. The kids got to go to the racetrack and take a tour. The road in a can that took them around. They got to a curve and Jamison was tellng them to slow down and Belle asked for them to floor it. Only Belle would be asking for such a thing. Jamison is adventuresome but Belle is my daredevil. I'm waiting for the day I need to take her to get a cast put on...Although I must say from the stories my mom tells me I was ver similar in the way I approached life. Go as high and as far and as fast as you can...I didn't break anything until I was 26.

So I Guess I'm A Bad Mom

At least that is how Belle makes me feel most days. Today we took Easton to the doctor because he has had a low grade fever and been completely fussy. I felt it was more than just the monster teeth coming in. Well I was right a bad virus is kicking his rear...There's some sores in his mouth :-( So on to belle. At the doctors office she had a complete meltdown. During intake she was screaming and laying on the floor. She refused to listen to me. Nothing was working...I tried her strikes...I tried bargining I tried everything. Finally the nurse bent down and sternly talked to her. I was so embarrassed. I'm contantly embarrased by her behavior. Nothing I do works. I know she's constantly tired from lack of sleep. I know that being told no constantly with food is frustrating. I try to make her feel special. I try to treat her like any other child. Making her fun food that she can eat. I just feel like I'm at my wits end. I don't want to take belle anywhere anymore. I feel like we can't leave the house because some other mother is going to judge. Judge me for not being able to control my child. Feel sorry for Belle because her mother can't properly take care of her and give her boundries. Days like today make me want to hide in a hole until it's all over.

Onto the exciting part of the day. Jamison went to Kindergarten orientation today. He got to meet his teachers and get a tour of the school. He was so excited when he got into the car. He told me all about his day. How he got to take a school bus into town and the craft they made and all the new friends he made. My baby boy is growing up.I can't believe I actually have a kid in elementary school. I guess now it's time to become a PTA mom ;-)

The Search For Belle

Ok so right now as her health is under control or as much as it can be....I'm going to write about the adventures of belle...Not that my other children don't provide endless entertainment but belle seems to be our drama queen :D Not that I'm surprised...You never believe your parents when they tell you "I hope you have one just like you" it seems derrick and I were blessed with one just like us!

Our newest adventure with belle is her sleep walking. We usually notice when one of us goes to return Easton to his crib after a midnight feeding. Last night though was a tad bit scarier. Lights were turned on and a search of the house was on. We checked the normal places..Behind the doors that lead to our room. The hall closet...the bathroom....the laundry basket...She wasn't there...I then went and looked under our bed. Sure enough she was passed out and using a suitcase as a pillow. I had to drag her out by her ankle in order to get her from under the bed. She groggily looked at me and walked back to bed. We tucked her in and she slept soundly the rest of the night!

Now Derrick and I are trying to figure out how to keep her safe. I think first on our list is a babygate at the tope of our stairs. I think as long as we got one that has a latch that you have to be coordinated for he won't be able to get through it...It was suggested I should get a hook/eye latch to "lock her in" but somewhere in my gut it just doesn't feel right...I'd be afraid if there was an emergancy I wouldn't have the time to fight with a lock...So this week I'll be babyproofing for my 3 year old...Well at least it gives me a jump start on what needs to be done for Easton....

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.