Update

I figured I would post really quick. The next few days should be VERY busy with a three day weekend coming up. The contractors have finished their work on the new house so all that's left are the projects we need to finish- dump runs, painting, cleaning, and fixing odd and ends. We are going to try and use every moment we can to get the work done. We've been at this project since October technically and its time to stick a fork in it I think!

I ended up running out of Lucy's iron. I have to order it from a special lab and their shipping always takes light years longer than I would expect so we ran out before her new batch arrived. In the time she was without her iron Lucy didn't vomit once. Sooooo now I am not sure what to do while I wait for her GI appointment on the 15th. I started her back up on about 1/2 the dose she actually needs yesterday, but I doubt it will be enough to get her out of the anemia. She still looks really pale so I would be surprised if her blood work in January doesn't reveal any anemia.

That's all for now! Thanks for checking in!

Christmas

So I finally have a moment to sit down since Christmas. It was wonderful but exhausting!

We definitely had an amazing holiday. We were blessed in far more ways than I can even count this past month and its hard to take in. I had anticipated this year would be a pretty horrible Christmas with money being so tight, a massive project on our new house going on, and trying to sell our current house all in the midst of Lucy's health issues- but I was wrong. Instead we were blessed with so much family time, thoughtfulness, and some extremely generous gifts that seemed to come up unexpectedly out of surprise. Zach and I have nothing left to do but sit back in awe and feel so grateful. Even in the hardest of times we can only see so clearly how truly lucky we are and be deeply amazed at the generosity of our loved ones. There is no Christmas gift better than that.

To all of our family and friends- Thank you all so much for going so far out of your way to make this year so very special. Thank you all so much for the date nights, outings, gifts, laughs, hugs, stories, and smiles. You have blessed us in a time we needed it the most and it certainly did not go unnoticed. We deeply appreciate everything you have done.

*I will post up some holiday pics when I have the chance. We received a new laptop and I don't have my photo software uploaded just yet!

Lucy has broken into a routine of casually projectile vomiting just once a day, pretty much everyday. She runs around, playing, and then suddenly stops, runs to the sink, vomits, and then goes back to playing. Its a bit strange. Shes been having mild stomach pain and some funky diapers so I am unsure what the exact problem is. It could be the iron supplement, however it strictly contains elemental iron and no additives so if it is in fact the iron then an alternative treatment will have to be figured out to treat her anemia. Then again, it may very well not be the iron. Since removing the lollipops Lucy has gone back to trying to put everything under the sun in her mouth. I am leaning more towards the iron as our culprit because the longer she remains on it the more consistent her symptoms become. Time will tell us what the answer is here.
Our next GI appointment is in roughly 3 weeks which will hopefully be enough time for me to figure out what our issue is or to at least get an idea of what our issue is. If its the iron we need to be totally positive because if she remains anemic she will likely need iron injections to get up where she needs to be.
Thank you for checking in on Lucy!

The perfect holiday picture...

Thats the closest I could get to a picture perfect photo of the kids in front of our Christmas tree. Enjoy.

Happy Birthday, Lucy!!!

Tomorrow, when Lucy gets out of bed, she will be 3!!! That seems so grown up. I guess I will finally have to stop referring to her as "The Baby" and telling Zachary that he needs to be patient with Lu's antics because shes a baby. I will have to find another excuse to explain this precocious diva's misbehavior!

This year has been a roller coaster, as has been the previous years. We have had periods of running on high that were a blessing and we have had clear periods of running on low(which is where we have been the last few months). We've seen some major improvements with Lucy's dermatographism and environmental reactions this year, which is a huge gift. But as it stands now we see nothing but a decline in her GI health. I have complete faith that she will turn around and get back on track, but having patience during the wait is a challenge when your child is losing weight.

I wonder exactly what this year will bring. How long will things continue to decline and just how good will things get once she pulls out? I just never know what God has in store for us with each year. When I was pregnant with Lucy I never dreamed that anything at all could be wrong with her. Heck, even when she started vomiting in the nursery after being born I still never thought something could be wrong with my baby- after all, other people have babies with problems, not mine.


Life with Lucy has truly been a learning experience for us all in so many many ways and I will never take that for granted. I will never take my little girl for granted. With each passing day I see my little girl as more and more of an amazing miracle. I am so very proud to be her mother.


Every time someone says that I do such a great job as a mother I simply think, "Its this child. Shes doing a great job." Shes a fighter. She doesn't wallow, complain, or pout. She gets up everyday and plays like any other kid despite having a case of the "stomach flu", despite being deprived of food of any kind, despite the social isolation. She never gives up, quits, or gives out on me. She has a strength that I admire.


As an infant all of her days, weeks, and months were a blur to me. Everyday was the same monotonous drone of watching my baby suffer in agony with no cure in sight. Feeding my daughter was enough to bring me to tears on any given day. She would curl her precious lips around her bottle, breath rapidly, then cry out in pain with a whimper that ripped my heart out. During her feedings the most I could get into her was an ounce at a time before she would begin to choke, gag, and vomit. But an hour later she was always willing to try again, and every hour after that she would try again and again and again in order to get the nutrition that her body so desperately needed. So that is what we did, feed around the clock. Miraculously Lucy avoided a g-tube when the doctors couldn't hold any optimism at all that she could avoid it.

I know that no matter what comes Lucy's way, she will work harder than I can imagine to overcome it- shes been doing it since birth. I have no idea what this next year will bring for Lucy. I have no idea exactly what I will post about on her 4th birthday. I know that at every birthday I post that I am amazed by my child, and I predict that next year I will post the same because I am truly amazed everyday by my daughter and the many gifts she has brought to our life.

A general update

Lu is hanging in there. I think we've established a new not-improved normal for her. She had another episode of projectile vomiting tonight and was back to filling diapers with toxicity. I was hopeful we were moving in the right direction after we had a few running days in a row of feeling good, but over the last couple days we are back at square one. I wont completely give up hope that this will improve because with Lucy you should always expect the unexpected. Her next GI appointment is scheduled for January 15th and unless something dramatically changes in the weight department, arrangements for a G-tube will likely be arranged.

Lucy's third birthday is coming up this Friday (as is our 7th wedding anniversary). I cant believe my tiny baby girl is going to be 3!

I can read!

Zachary is reading pretty well right now. I am proud for two reasons- 1.) Hes my son and when your baby starts reading any parent would be proud, and 2.) I taught him how. Its a great feeling to see success with our homeschooling.

Of course, now we cant spell out our Christmas present discussions anymore. I am just so surprised at how fast Zachary picks up on all this stuff. He learns so fast and easily. I selected teaching materials for this year with the intent to review Kindergarten. No, its not that I presumed my son was stupid, its just that I assumed with his obvious disabilities that he would be learning impaired and that those impairments would put him behind. I expected the homeschooling process to be a slow and trying one. Instead, I think I am going to have to buy an entirely new curriculum in the new year because hes just way beyond the material I have. Hes bored and I end up having to coerce him into school with the threat of video game loss over his head. He breezes through our workload in no time flat and consistently craves more focus on reading, science, and social studies.

Zachary definitely struggles in some areas. His ADD makes his ability to focus a constant challenge. I have to stand right over top of him most of the day and help divert his attention back to his work. I would say he only has the ability to focus on anything for about 2 uninterrupted minutes, which tries both his and my patience through the day. He also lags in math. His strongest points are his handwriting, science, and reading. His handwriting is really something to see. Last year his teacher said Zachary was writing at a 3rd grade level- that his dexterity skills were WAY above his age level. I don't know if hes at a 3rd grade level(I have no idea what age appropriate handwriting is) but his handwriting is very very nice!

Homeschooling is definitely nothing I had expected it to be, but even on the days we struggle I absolutely love it. I love teaching my kids new things, seeing how they learn, and being right alongside them while they learn. I just cant even describe the way it changes a parent's relationship with their child to homeschool. I cannot foresee ever regretting the decision to homeschool my children.
*edited to add- yes! This WAS a shameless brag! Ha! I just patted myself on the back!

Thanksgiving Pictures

A little late I know:

Too fast and too slow

Lu is continuing to idle in a state that leaves me cautious. Shes definitely not digesting well and its definitely making her uncomfortable. She woke up from her nap today with a stomach so full of air that she looked pregnant. It was obviously uncomfortable for her. I noticed she kept pushing her stomach into the edge of table tops and onto the edge of the stairs to put pressure on her stomach. She also had a case of diarrhea all day on Sunday and it seemed to continue right on into today.

I have no idea what the source of the problem is. Things seem to take entirely too long to go out of her stomach, but once beyond that, things move too fast through the rest of her GI tract. Its confusing that's for sure.

I am worried that this could possibly be caused by the iron supplements Lucy recently started. I spent quite a bit of time finding the best elemental source of iron I could that didn't contain ANY additives so I cant understand why she would react to it if she is. And if indeed she is reacting to it this presents a new problem with correcting her anemia.

For now we will keep on keepin' on and hope that Lucy's system works it out- its been known to happen. I will give her a few more days and then I will call her GI to get some advice.

Its Lilly

So this is THE dog. Shes kinda cute, kinda ugly. Her hair is the texture of a brillo pad mixed with twine. Her saliva is the consistency of cake batter and she spends WAAY more time then I care to see licking herself. She smells like a combination of orange essence and a wet dog. Her hobbies include snuggling with the kids on the couch and playing fetch after a serious game of Tug O' War. Shes a superstar at holding her bladder. The ONLY place she will sleep is between me and Zach on the bed. If he and I attempt to snuggle together she climbs on top of us and stares at us until we move apart. Her favorite food is Lucy's sugar cubes but shes perfectly willing to eat the "dog food soup" Lucy creates for her each day with water and dog chow. She shreds stuffed animals like paper but has yet to lay a tooth on Lu's precious "Lamby"- as though she can sense its special. She enjoys watching other dogs on TV and gets irate when she sees a cat. She absolutely stinks at walking on a leash to the point you would think she has some sort of brain damage the instant a leash is strapped on. There is something about that 4 foot strap of nylon that makes this dog get completely ridiculous (and in turn, us the same).

So there she is. A wire haired Jack Russell Terrier. You may recognize her as the dog who appears in the current Ragu commercials.

Using Caution

I am keeping a close eye on things and trying to remain optimistic that things are going to improve for Lu. After all, things are MUCH better than they were back in September, however, they are still not normal- but then again maybe this is our NEW "normal".

Last night Lu projectile vomited across the family room twice without blinking an eye. Today, she had multiple diapers that were...well...lets just say, NOT normal. Her stomach has been bloating up during the day and shes gassy. Hopefully this is a random hiccup that will correct itself, but I am remaining cautious.

I am the worst blog owner ever...

aren't I? I haven't even posted a "Happy Thanksgiving"!! What is wrong with me?
We have just been super busy and not with anything too terribly interesting. The usual- selling a house, fixing up another, homeschooling, and trying to feed a 2 year old small amounts of formula on a constant basis.
We had a great Thanksgiving, we always enjoy spending time with our families. Zach and I enjoy(okay its more like we passionately LOVE) the food but its hard when your kids just can't join in. The older they get the harder these events seem to become. Either way, Zac and Lu still had a great time with grandparents and all their Aunties. Whenever I get up the energy to deal with my frustrating camera I will post up some pics of the kids in their cute Turkey Day wear.
The kids are both still on the rebound from an episode of croup last week. I had to usher Lu off to the pediatrician this morning because she was insistent that her ear was killing her. Dr B says the ear looks fine but it maybe had some fluid that I cleared out when I put some Hydrogen Peroxide in there.
We decided since we were already there to FINALLY do Lu's weight check. She came in at 24.8 lbs, which is nothing to be happy about. At the time of her scope- in which she was "cleaned out" and had been starved for some 40 hours- she came in at 24 even, so 24.8 likely means she hasn't really gained any weight. This was exactly the reason I hadn't felt like hauling her into the doctors office on the other side of the city in the middle of flu season. At least its done for now. We will go back in a few more weeks to check again and then we visit the GI for a follow up in January to decide about a g-tube.
That's about all there is to update on. I feel like I am juggling entirely too much at the moment. I know in a few months it will all be over and we will be SO happy, but I am definitely praying daily for peace. If anybody could send some good real estate vibes our way or if anyone happens to know someone looking to buy a FABULOUS house in my area send them our way! It would definitely relieve some of my stress! Haha!

Results

So I just got the call from Lucy's GI, Dr G, about her biopsy and blood work results.
First, her labs showed that she was pretty anemic and needs to take an iron to supplement. This is the first time that's ever come up and as a matter of fact back in July she was not anemic. I had a feeling this was an issue though because her face is very pale and she bruises pretty easily. We are going to have to hunt for a supplement that is elemental, like her formula, which may prove to be a challenge.
Second, her biopsies did not show elevated eosinophils which means that her body IS NOT reacting to her formula!!! HUGE sigh of relief! This means no modular nutrition necessary! Yay!
However, her biopsies did reveal that her intestines are healing from something. He said possibly a virus that hung around way too long and ravaged her system, or a bacteria or something that shouldn't be there but there is no way to know for sure because the biopsies didn't reveal that anything was actually there- just that her intestines were trying to heal from whatever it was.
We discussed Lucy's feedings and where we were at quantity wise. Her weigh in at the hospital was just 24 lbs even, which is very poor. Lucy is still struggling to hold onto a solid 20 ounces per day without feeling sick after eating. Its very hard to stay on an all liquid diet and pack in the quantity necessary to grow and thrive- its the reason MANY kids on an elemental diet end up with a G-tube.
The plan for now is to return to our pediatrician every couple of weeks for a weight/length check to see if Lucy will begin to pick back up once her intestines fully recover. In January we will meet with Dr G again and if her weight remains poor we will put in a G-tube to supplement her feedings at night with a slow feed. Dr G said this is a very common practice and not something to be afraid of- sort of an expected path for a kiddo like Lu.
For now I am pleased we are keeping our Neocate, relieved not to have to go modular, nervous about Lucy's weight, and eager to get her happy and comfortable again no matter what it takes- G-tube or not.
Thank you all for so faithfully checking in for Lucy's results!!! We appreciate all the love and support!

Update

At the risk of jinxing our progress I am going to say it out loud. Lucy is doing SO WELL!!! She is having a stellar few days in a row. Shes chatty and energetic again. She hasnt spent ANY time at all in my lap whining her belly hurts and has been consistantly sleeping through the night! Yaaaaaay!! It has been so nice! I have been able to actually move about the house without her following behind me, begging to be carried. This is a huge change from the last few months!

Update

Lucy seems to be getting right back in the saddle. Yesterday she did much much better. Normal appetite, normal behavior. Good news! Now we just wait for our biopsy results, which will hopefully be entirely normal.

Update

Lucy is hanging in there. She is a trooper that is for sure.
She started off this morning with more blood than what was considered acceptable in her diaper. The hospital called to check in on her and when I told them what was going on they wanted the GI fellow on call paged. I decided to wait things out since our doc is not on call and is off. It didn't look to be anything terribly serious and I didn't want to call in the cavalry, put Lu through more hell and have it all turn out to be nothing. The bleeding thankfully seems to have stopped.
Lucy wasn't terribly interested in formula today, she requested "snow" more than anything. Generally she was upbeat for most of the day, but kept having episodes of pain. We were out and about this afternoon and had to come rushing home because Lu just HAD to get out of the car because she was feeling so bad. By dinnertime she was happy and bouncing around again though.
I am hoping tomorrow is dramatically better for Lu.

Home Safe!

We are home!
I want to say thank you to EVERYONE that prayed, sent good thoughts for Lu, and just in general had concern for Lucy this morning!!!

The scope prep for Lucy was horrible. I wont even go into the details, but suffice to say she simply didn't handle the process well at all. Watching her endure Thursday was heartbreaking. Shes quite a wonder woman!

The scope went well and was free of complications, we are so thankful! The OR was running about an hour behind so we spent quite a bit of time down at the hospital this morning and didn't get home until 5. By the time Lu was taken in for the procedure she had been without formula since Wednesday evening! She was not happy and running out of patience for the procedure to start.

Dr G said that he spotted a section of her intestines that was inflamed and hes not exactly sure what it means. He took multiple biopsies from various areas and doesn't want to make any decisions about our next move until we get the results back. They also took a lot of blood to look for any nutritional deficiencies or other indicators of a big problem. Dr G is not expecting to see results until the end of this week.

Lucy weighed in with another weight loss and after factoring the expected loss from her scope prep, this means that Lucy hasn't begun to regain weight from her recent loss. Hopefully that will start to change sometime soon, it is one of the issues that concerns me the most.

We are still working on bouncing back. When Lucy came out of the OR and was alert we offered her some very watered down formula. She appeared to do just fine with it, but after we were discharged she vomited it all back up projectile style(which was over an hour and half after she ate). Shes still not eating and is now asleep on the couch. After nearly two days with no formula I would expect her to have a voracious appetite. Hopefully she will rest and then feel like eating something.

I will update again tomorrow with her progress! Thank you all for reading!!

Aquarium and Gearing up for Friday

Lucy's scope is on Friday and we are getting prepared. I just returned from CVS, where I purchased an economy sized bottle of Mirilax, extra absorbency diapers, and a Mounds bar. Needless to say, I will be busy tomorrow so there will be no time to post before Lucy's scopes. We are hoping things look good so that the only thing we lose out on are lollipops, and not formula. I will post once we are home and settled.

We went to the aquarium on Monday. Grandma Daisy got us passes and we paid her a visit while she was working! Pics below:


Zachary waiting for the dolphin show to start:



The escalator goes up:



They had a new jellyfish exhibit and it was amazing:

Crocodile, silently staring at us:

Big Zach and the kids in a forced pose picture:

Lucy starting at fish that was about as big as her:

Big Zach holding Lu face to face with the crocadile to mock him:

More nature than we expected to see that afternoon:

Birds in the amazon:

Lucy giving me a fake smile:

HUGE sea turtle:

Zachary with the bubbles:

Fire boat out on the bay:

Waterfall:

Happy Halloween!

Zachary the scary skeleton:



Lucy the gorgeous fairy princess:



Together(and smiling!):


We made handprint spider T-shirts:

Hanging Around

Waiting for this scope is so hard! I am trying to be patient, but I just cant get a read on whether or not we are on the up or not. I am relying on this scope to tell me things are alright. Lucy still seems to feel just "Blah" most of the time. We've been staying low key around here since Lucy just hasn't felt up to too much excitement. Shes still dealing with some nasty diapers which makes her very uncomfortable. She also still has a hard time taking full feedings so I don't think we are making up for all the weight loss of last month.
The kids are super excited for Halloween on Saturday. They usually trick or treat just a little bit, then run back home to hand out candy to the other kids and open their own presents. Yes, "presents" is right. Last year we started buying the kids each one gift that they get once they have trick or treated. Neither kid can eat candy like all the others, so for them a neat little toy helps soften the disappointment of not being able to gorge on candy.
I will be sure to post up pictures of our Halloween fun!

Its a date!

We are still operating under a Code Brown around here(see post below if you don't get that reference). No changes there.
The good news is that after leaving a slightly irate message to the GI this morning we got a call from the hospital to set up her scope. Our date is for next Friday the 6th! Finally!
To be honest, I am thinking that the issue all along has been the lollipops and at this point Lucy's body is just trying to get back to normal digestion after the inflammation disappears. I could be wrong, I could be right, and the scope will determine which it is. But at this point, my gut feeling is that we will not get lollipops back and that at any day now Lu will start to normalize. At least, this is my hope!

Code Brown

We are still riding this roller coaster around here. Things look good for a day or two and then get worse, then get a little better, then get way worse, and so on and so on.
Lucy got super constipated last week and for the last two days shes had pure water diarrhea that leaks all over the place. Ugh, yeah that would be a Code Brown. Her butt hurts so bad she winces every time she has to sit down.
Fortunately by this evening she had stopped going so frequently and really perked up in the energy department, so that is leaving me optimistic tomorrow will be better.
I STILL have not gotten a single call about scheduling her scope. Our allergist gave me license to be a huge b**** until the hospital gets it on schedule and quite frankly with all the stress going on in my life right now I am inclined to do so just for the sake of letting my frustrations out! lol
Thats about all I can update on for now! Thanks for checking on Lu!

Crazy

Last night Zachary was watching TV on our bed while Big Zach was in the shower. When Zach came out Zachary was watching Catholic mass. Zach said "Whatcha watching? Why are you watching that?" Zachary's answer was simple- "Its the word of GOD, dad. Because this is the word of God!" And he was adamant that he finish watching it too!

Lucy is hanging in there alright. After my last post I went to bed and Lucy slept through the whole night! Yay! And then did it again last night too! Double yay!
I started trying to increase Lucy's feedings to test the waters since the lollipops have been out for a week now. So far no diarrhea after eating, like before, but she doesn't seem to be feeling well even still. She just lays around most of the day. Her lips continue to flare and bleed, but not as badly as Sunday's mess.
We took the kids shopping for Halloween costumes today. Zachary picked himself out a "scary" skeleton and Lucy spent the entire time asking if we could go home. Eventually I picked up a fairy princess costume that I am sure if she were feeling right, she would love.
I am hopeful that the fact shes not having "the Big D" after each of her larger feedings today is a sign that the culprit behind this entire fiasco has all along been the lollipops. Its heartbreaking to permanently lose them, they were her first and only food she's had for more than a few days. However, losing lollipops pales in comparison to losing her formula.
At this point I cant really tell if we are on the up and up or not. I stare at her all day long waiting for something to happen, scrutinizing over every ounce of formula and over every wince or whine she makes. I feel like I am losing my mind. I don't even remember what normal was like to compare all this to anymore. Its so confusing and frustrating.
I spoke with both the allergist and GI doc. We expect to hear from the hospital today or tomorrow about a scope. Both doctors remain in agreement that we need a scope since its been 2 years since our last one, regardless of the lollipop situation.

Bah!

That's about all I can say when asked "How's things with Lucy?"
Its frustrating. Shes becoming an absolute rail and just doesn't even act like her usual spunky self these days. I want to help her but I don't even know which way is up anymore. Should I push her to eat more so that she doesn't waste away, or will that only put her in further pain and make her condition worse?
Her lips reached an all-time AWFUL yesterday when she woke up from her nap . Her cheeks, mouth and hands were covered in blood, and her pillow case had soaked a 3 inch spot straight through to the pillow. She has deep dark circles around her eyes and little red spots on her cheeks. Lucy also hasn't slept through the night in so long I cant remember. Some nights shes up once, others its 4 or more times. Friday night she had a diaper blowout around 11pm, and is now constipated- which is probably not good.
AND, the hospital STILL hasn't called to set up her scope!!! This is only going to further delay treatment for her!!! Ahhhhh! Sitting back and doing nothing while my daughter is clearly not doing well is just not something I am comfortable with. Lucy hasn't been in a boat this bad since she was a newborn, and I felt helpless back then too.
I am going to see if I can get in touch with at least ONE of our specialists tomorrow just to update the situation and hopefully get some reassurance that things are being done to improve her situation.
Thanks for checking in!

mmmm....hair?

We've got Lucy totally off of the lollipops now. Shes not even asking for them. However, now shes trying to find other things to eat. Today I caught her eating old used coffee grounds, hair, and her toenails. Gross. Of course, SHE doesn't know its gross because comparing it to her formula I am sure it all tastes good.
The bad news is that despite not having any lollipops at all her face still has a rash and her mouth is still bleeding. Shes also still complaining of occasional belly aches.
I took photos of Lucy eating her snow and I will put those up later.
Thanks for checking in on Lu!

We are working on it

We are still weaning Lucy off of these lollipops. Shes not giving them up without a fight. When no one is looking Lucy builds various towers out of furniture and toys to climb up in the kitchen. I moved them to the top of the refridgerator early today and later Zach caught her walking into the living room hiding one behind her back. She had moved a chair up to the counter and climbed up to the fridge. Shes a sneaky little bugger.
I may end up having to throw these things in the trash before she gives up!

Day 1

Yesterday was Day 1 of lollipop removal. It was not easy, as I expected. I took the kids up to Target and we got a Magic Bullet to make Lucy some "snow" out of ice. She absolutely loves her snow, but shes no fool, its not a lollipop. If you know Lucy, you know she NEVER gives up so I listened to a continuous mantra of "Can I have a lolly now? Can I have a lolly now, PUHLEEESE?" all day long. I felt like the meanest mom in the world and I started to wonder what memory will she have of this, will she think I was cruel and harsh?

This experience is making me rethink the idea of trialing foods ever again. How on earth can I put her through this again later on down the road whenever we get back to trialing foods? She doesn't understand this. This experience is like giving your kids everything they ask for on Christmas, letting them play with it for 15 minutes and then telling them that they need to pack them up and give the toys away to someone else. This is all way beyond a 2 year old's comprehension. Clearly we wont be trialing foods at all this year, but I think I may turn trials down until Lucy is old enough to understand she may not get to keep the foods we trial. From a psychological standpoint this sounds reasonable.

My second concern right now is that the lollipops equated a lot of calories for Lu with her limited formula intake. Each ounce of formula is 30 calories and each lollipop is 20 calories. So cutting out the lollipops now further reduces Lucy's daily caloric intake. The process to comb through her stomach issues can take months. Scheduling for her tests could happen as far as 4 weeks away, much less finding a cure for whatever is found on those tests. How thin will she be by then? Its a scary thought.

GI Appointment

First, you HAVE to congratulate this country girl for driving all the way down into the city all by herself in rush hour traffic! Yay me! LOL

Now about the appointment:
We really liked our new GI, Dr G. He was very nice, straightforward, knowledgeable about autoimmune gut diseases, and quick. He is quite familiar with our allergist, Dr S, and is more than ready to work with him as a team to coordinate Lucy's care. Dr. G made attempts to make friends with Lu, but was rejected as usual. I appreciate his efforts though!

Lucy weighed in at less than 25 lbs, which is over a 1.5 lb weight loss- which is pretty significant for a two year old. This says shes not getting enough calories during the day to maintain growth. I was pretty shocked she had dropped so much, I was expecting more like a 1/2 lb or so.

Dr. G said that given all of her issues right now- the Raynauds, rash around her mouth, busted lip sores, weight loss, and failure to tolerate large feedings- indicates that her stomach is inflamed and not functioning properly. He suspects this inflammation is from Lucy not tolerating her formula anymore.

In order to be sure Lucy will need scopes done to check the condition of her GI tract and confirm that it is indeed inflamed. If it is inflamed Lucy will no longer be able to drink her Neocate 1+. She will have to go onto what is called "modular formula". Modulars are individual building blocks of carbohydrates, fats, and proteins. We basically will have to build Lucy a formula by hand. It is highly unlikely insurance will pay for this type of nutrition and it has a STEEP STEEP cost. It will cost FAR more than the current elemental formula she is on now, which was around $1000 a month before we had insurance coverage.

On top of that there is no guarantee changing to modular formula will enable us to avoid a tube. The modular formula isn't tasty and there is a chance she will have to be G-tube fed to force it in her. So for now, the prospect of a G-tube is still looming overhead, but is not a reality in the next month or so.

And to add insult to injury, Dr G wants us to take Lucy off of the lollipops. We need to go into this scope knowing that if her gut is inflamed the sole culprit can only be the formula. Removing the lollipops is horrible. I mean, seriously, these things are Lucy's joy. The one thing in this world that she can have that is tasty. How on earth can I take them from her?? I don't know how to do it. For now I am thinking the best method will be to slowly wean her down and then cut them out. I feel like if we go cold turkey, she would flip out. Taking out her lollipops is torture.

That's pretty much our appointment in a nutshell. It wasn't easy information to swallow. Things are going to be complicated for a while in order to sort out this mess. I am not even certain what I am hoping for out of this. If Lucy's stomach isn't inflamed, it means her digestive tract simply isn't functioning - which opens up a whole other can of worms and also reopens the possibility of a G-tube in the very near future.

Nervous, excited, worried...

Yeah, I know, I have completely stopped posting here lately. We have so many things going on right now I have no idea what I should be most stressed about at the moment. I have no idea how to post about one worry and yet not another, so instead I just haven't said anything while we sort through things here.
But, here's the lowdown on Lucy here lately:

Lucy has made no progress on the health front. Shes not sleeping well at all and her mouth sores are still wreaking havoc on her poor lips. Her Raynaud's remains in full effect, but fortunately is not causing her any agony (maybe some discomfort but certainly not agony). And I cant tell whether its me being paranoid with worry at this point but I think she may have lost a bit of weight.

Our big appointment with our brand new top of the line GI specialist is on Friday and I am excited/worried/nervous/scared/eager to hear what he has to say. I don't know what it is I WANT to hear from this man, but I do know that I DON'T WANT to hear him say something to the effect of "I don't know what is wrong and unfortunately due to her condition I cannot offer any solutions."

I'll post again once we get back from our visit! Thanks for checking in!

Neglect

Its been quite a while since I last posted and I apologize. I am sorry I have neglected anyone that would take the time to read Lucy's blog. Unfortunately there just hasn't been much to report. Things are the same and as we wait for her October appointment I just feel more and more like we are spinning our wheels. At this point Lucy is STILL battling the mouth sores on a daily basis even with the huge dose of medication shes taking each day. She also has now had a major flare up of the Raynaud's phenomenon. All together it makes me worried for Lu and what could be going on, I hate sitting here and doing nothing.

Girls

Sugar




Spice



Everything Nice

Sour Grapes

This is what Lucy looked like the other day. Her lips broke out in hives and burst. Definitely painful. I had stopped giving her her meds since her stomach issues came about around the time we upgraded her dosage from an adult dose to 1 and a 1/2 times an adult dose. After pulling them her allergies seemed to stay at bay and with her gut on the fritz I was concerned about starting the meds up again if it wasn't truly necessary. But, this past week Lucy became impossible to deal with, trantrumming nonstop and acting out of control- a side effect that typically results when her skin begins to "crawl". The other day her lips broke out and I figured out that we needed to go back on the meds regardless of her gut issues. I started her up again yesterday and as of today she is about 80% improved in the allergy department, thank God. Her mood is back to normal and all is calm. She is still taking in less than 4 oz per feeding, but everything is good as long as we stick to that ritual.

I haven't posted on the blog lately since I have just been feeling negative as anything and that is not what I started this blog for- a gripe and moan session for myself. I have had a hard time keeping my chin up since Lucy's latest downward turn. Like magic, my normally optimistic outlook has turned into nothing but negative thinking even when its not necessary. And really, who wants to share that attitude with anyone? I will spare you.

Starting School

We started homeschool this week. Its been an adventure! haha!
Its going well, I am learning what works best and what doesn't through a trial and error process. The biggest challenge has been juggling both the kids while trying to get something DONE. With Lucy not feeling well shes really a handful and trying to get a feel for homeschool at the same time, makes it a challenge. But we are moving right along.
I feel confident we have made the right choice. I can already see the unique accommodations that I can make for Zachary's special needs. For example, I wanted to get Zachary practicing his handwriting, which he hates but struggles with. The first line I was insistent that he sit still in order to focus and work quietly. But by the second line the silence had evolved into him singing "Twinkle Twinkle Little Star" over and over and over. The difference in his work when he was quiet vs when he was singing and bee popping in his seat was HUGE. His work was actually BETTER when he was allowed to "multi-task". The ADD mind is quite busy and works best when kept that way I guess.
Zachary started his swimming lessons today and did REALLY well. The school we take him to has this specific block of time reserved for homeschoolers at a discounted price. I got to sit and chit chat with other homeschool parents and get advice, while Zachary swam his heart out in the pool. He has really come around with his swimming skills this year and I was impressed!
Lucy is still hanging in there. I can tell she just does not feel well, but is pushing her way through it.

Nothing New

Lucy is hanging in there. Fortunately we have managed to get down a routine that has stopped the diarrhea- slightly less than 4 ounces per feeding no closer than 2.5 hours. Shes still complaining of periodic belly pain, but it doesn't appear to be crippling. She was up a couple times Monday night, but seemed to sleep well last night.
I keep looking at the calendar and trying to will the days to go faster so we can see our new GI on October 9th.

And somehow I feel better

I took Lu in to see Dr B, our pediatrician, today. Shes a great doctor because not only does she seem to know everything and always turn out right, but she has a way of easing your mind when you come in worried.
She gave Lu the once over and ruled out a viral issue as the cause of her diarrhea. She sat down and we discussed where to go from here. Dr B was quite honest and said that in her mind the next step is to get Lucy a G-tube. If Lucy has a G-tube we can run feedings at night at a slow rate so that she can even "eat" while she sleeps. If we have to work within the limit of no more than 4 ounces every two hours Lucy will have to eat when she is sleeping in order to sustain growth. A G-tube makes this possible.
However, its not like you just stop off at the hospital and have them insert a port into your child's stomach. First, we need to find ourselves a new GI specialist and then go from there. Fortunately I have gotten a number of recommendations from people for a Dr G down in the city. I called this afternoon and got the earliest appointment which is for Oct 9th. So until then we wait, and we hope in the meantime that Lucy will continue to tolerate at least 4 ounces every 2 hours.
I'd like to say this hadn't really knocked me down a bit, but it did. I had gotten comfortable with the idea Lucy wouldn't have food and as long as she could be happy and healthy without it I can be happy- but it doesn't seem as if that is even an option at the moment. Shes formula-only mere months from her third birthday, things look bleak, and now she is still sick. Its a hard pill to swallow. I am adjusting to this "failure" but it still hurts.
We've been blessed enough to have quite a few family and friends offering distraction and support over the last day or two, which has been great and we can't thank them enough. So for now, I will hunker down and settle into this new "norm" while we anxiously await answers or solutions.

Thats a can of worms I dont want to open

Yesterday's changes didn't go well at all. We adjusted the concentration of Lucy's formula just slightly and that produced multiple diarrhea blowouts. We were at my mom and dad's all day and by the end of the day she had a huge welt on her behind. There was no denying she wasn't tolerating the change. I drove home the whole hour and half spinning with all the horrible thoughts of what exactly this could all mean for Lucy. It certainly doesn't mean anything good.
I wanted to update even though I am not in a position to talk about it just yet. This development of pain and formula intolerance over the last few weeks has really knocked the wind out of me. I know that things could be far worse, its not like she is dying, but in terms of her disease's course, this is all just bad bad news.

Busy busy

I know, I havent posted in a while. We have been busy and stressed as usual and I just havent felt like posting.
Lucy is still not tolerating full feedings. She cant seem to take in more than 4 ounces every 2 hours. When this schedule is combined with the number of hours she is sleeping and unable to eat, Lucy cant possibly consume enough formula. I spoke with her doctor today and we are going to start to try and concentrate her feedings a little more so that per ounce there are more calories and nutrition. Hopefully she will tolerate this so that she can stay on her growth curve.

a-ha!

Yay! Camera is working! May I now present, Beach Vacation- August 2009 Version:

On our vacation we:

Watched the rain from our balcony:



Enjoyed the scenic views:




Contemplated long and hard about what to do during our stay:




Took impromptu naps:



Made swimming pools by the sea and got sand in crevices we never knew we had:

Made lovely castles:

Left our sandals in the sand:

Ate real SAND-wiches:

Admired the greenery:

Got sandy and wet:

Admired de ocean life:

Saw the biggest waves ever thanks to an oncoming hurricane:

Looked cute:

Took in all the beachy-like scenes:

And thanked God for a beautiful sunset:

Fried

We made it home, burnt to a crisp and all. Apparently 4 hours on the beach is our skins' maximum time in the sun before burning. Its okay though, we had a good time playing in the sand and water! Well worth it in my mind.
Vacation went well. Lu's stomach is continuing to give her trouble. She is just not tolerating feeds larger than 4 ounces at a time and her stomach is giving her fits at times even still. She spent quite a bit of our trip not feeling well at all. She fights it very hard, trying not to let it stop her for a moment. We took her on a walk on the boardwalk our first night there and she struggled to walk with her belly hurting so badly. I will give her credit, she refused any help and threw a fit when Daddy forced her to ride on his shoulders so we could get back to our place.
I am really not sure why Lucy's stomach is not cooperating with her. I am sort of praying it will all pass and that she will wake up one morning just fine and dandy. Its been known to happen with Lucy. Either way, we are set to head out for Family Camping tomorrow and I am hoping she does well.

*as I expected my camera is still not working and I can't share our vacation photos :( Its okay feel free to cry about it, I sure did! lol

Wheee!

Its time for vacay! Its the first time ever that we are spending nearly ALL of Big Zach's vacation actually ON vacation. Normally the best we can do is go away for a weekend and then putter around the house the rest of the time. Not this time! First, we have our beach vacation and then we come back and head out again for family camping. Yay!! Maybe when we get back my camera will cooperate and let me post up pictures to share....

Finally!!

I finally got a call from Dr S. Something happened and the report from the lab never reached his desk, so he apologized for not getting them to me ASAP. Dr S is always amazing about returning phone calls right away so I knew something was amiss when he hadn't called. I didn't actually get to speak to him since he happened to call while I was in the shower. Figures.
But anyway, everything looked good, which was a relief. I had been concerned about Lucy's nutrition since her formula intake is pretty poor but it seems that everything is just fine in that department. Also, all of the allergen tests came back with nothing, so there are no clues there. The only positive was that her numbers for milk came down, which hopefully means she no longer has a serious reaction to it. We consider milk dangerous and scary around here and it would be nice to not have to worry about it so much.
The fact that Lucy's blood work gave us no clues on which foods to possibly try is typical, and it means we will have to just pick a food and cross our fingers. The doc pretty much gave me an open door to pick whatever food I want to give a go. Dr S said Lucy sets her own curve when it comes to reactions so the best we can do is guess where to go next.
I think I am open to trying a food in the beginning of September, but if she should fail I am going to be adamant that we take off a year or even more. I think if by age 3(December) we are completely unsuccessful in getting a single food, then its time to accept Lucy's limitations with what they are and go on with life for a while.

no news is....no news

I have still been unsuccessful in my attempts to get a hold of our doctor. Its frustrating as all heck and I am starting to get annoyed. I will make another call tomorrow and leave another message. Bah!

The good news is that I got Lucy's diarrhea under control and we haven't had any episodes of that for the last several days. She just wasn't tolerating large feedings all at once. I charted her feeds and episodes of tummy trouble and it became clear that anytime she drank over a certain amount all at once, she would get sick. So now we are doing 4 ounce feedings every 2 hours or so and that is keeping her her gut under control. I am not sure what brought on the sudden intolerance to large feedings, but I am going to give her a try again later in the week.
Also good news is that I think I have finally found a pair of shoes that Lucy can wear without tearing up her skin. I searched high and low and finally found a pair of shoes made from suede and not canvas or leather. The suede is soft so that there are no hard or rough edges rubbing against Lucy's foot. She tried out her new shoes today at the store and just ran her little heart out. Yay!
I tried to upload pictures to share(because really these shoes are just so darn cute!) but my camera isn't working again. The port to put in the cord that links it to the computer is non functional, so I have no idea if I will ever be able to share photos again at all. Its very disappointing.

I will update once I get a hold of our doc! Thanks for checking in on Lucy!

Annoyed? Yes.

Our cable, internet and phone have been out since Saturday. That in itself is not all that frustrating, but what is frustrating is dealing with the cable company.

Everything shut down on Saturday and we called to see if it could be fixed over the phone, sure enough it couldn't, so we set up a service appointment for Sunday. I must say this company has the most vague time slot ever for a service call- anytime between 8am and 8pm we were told. What?! Seriously, this can't be narrowed down any further?? No.

Zach called the cable company on Sunday around 11 to see if they could give us a better clue as to when they would be out. After all, it was Sunday and we were trapped at home with 2 kids and little in the way of entertainment. They told Zach that the technician would be here before 8pm. Great.

By about 5pm the guy still hadn't come and my husband was getting steamed. He called once again.....and shockingly was told the tech WASN'T coming at all!!! Turns out they don't even have techs in this area on Sundays, the entire appointment was a mistake!!! So my husband's blood was boiling at that point because we have wasted an entire day of our lives, and after a brief temper tantrum we were awarded a 32$ credit on our bill and promised once again that a tech would come out on Monday....between 8am and 8pm. Yippeee...

Fortunately, I had a playdate set up at my house for the kids this morning so that kept us entertained while we waited. The tech man showed up around 3:30 and discovered that some piece of our equipment was shot due to a recent lightening storm and a whole new line would need to be dug out for us to get service. In the meantime we are hooked up to our neighbors cable line to get service until things can be repaired. This works out well for our neighbors, who usually only have basic-basic cable; they are now receiving the full line of cable channels so that we can get our stations as well. A win- win!

First thing on my list of calls to make now that we have a phone again is to call Dr S tomorrow and find out where our test results are.

Still waiting

So, no I haven't heard from the doctor yet. I haven't gotten word yet on her test results. I thought for sure he would call today. Dr S ALWAYS calls the second he gets the results. So I will just have to keep waiting. I am also crossing my fingers that Dr S isn't off on a 3 day weekend this weekend, because that means I am not getting the results til Monday at best.
Lu has been sick since Monday. Shes had a nasty case of "The Big D" and her rear end is fried. Shes walking around like a cowboy that just got off a horse and complaining her butt hurts. Shes had some trouble sleeping and one day she will wake up screaming, then sleep for 4 hours in the afternoon. I don't know what it is. We were outside at the church picnic all day Sunday so at first I thought it was just the heat, but as it continued I thought maybe it was all the pool water she swallowed. Its still going on so I don't think its the pool water. I suspected that it was the increase in her meds, its possible it pushed her over her threshold, so I pulled her meds to see where we get since we are going to be home in the AC all day the next couple days.
So for now I will wait on the test results and wait on all this tummy trouble to stop for Lu!

Peas and Carrots

Being a parent of two kids has been drastically different from being a parent of one kid. When we found out we were expecting #2 we thought, "Well this should be such a smooth and easy transition. We know all about being parents now, so it wont be as hard as when we brought Zachary home." Of course, when we brought Lucy home our house looked like a toy store exploded on it and once again Zach and I looked like zombies. The fairy tale impression of having two sweet angelic children in a spotlessly clean house had quickly slipped away within Lucy's first 24 hours. Having two children moving in opposite directions at all hours of the day and night was exhausting. Duh. What a surprise. I look back and see how dumb we were for thinking the whole thing would be blatantly easier. Parenting is complicated....after all we are raising people! As it turns out parenting two children is no easier than parenting one, and parenting one is pretty darn complicated.
Whats funny is the drastically different way in which we parent our first and our second. For example-
Your baby starts to cry:
With baby #1: you run to him immediately and frantically start to check for a wet diaper, potential hunger(even though you just fed him 10 mins ago), or gas and then dispense Mylicon drops just to be sure and rock him back to sleep while singing sweet lullabies.
With baby #2: you finish getting the gum out of kid #1's hair, kick a path through the toys to baby #2 and THEN rock the baby back to sleep while humming the theme song to "Dora the Explorer" so you can finish washing the crayon marks off your wall.
Whether this difference in parenting is due to a dramatic difference in the personalities of 1st and 2nd children or due to the fact things have to be changed when there are 2 little beings that need love, I don't know- its probably a little of both.
My babies are like night and day or peas and carrots (which ever you prefer). Zachary is my collected "Little Dude" who is a ham at heart and usually very little trouble- his aim is to please and he rarely questions authority. He can find the humor in just about anything and thinks that everyone is his best friend. He tries hard not to complain even in the most difficult of situations, like, for example when he caught a nasty stomach bug (seriously the stomach bug from hell)a year or so back. He was throwing up for hours over and over and over again. He laid underneath a blanket watching movies, sitting up to puke in his bucket and then laying back down again without so much as a whimper. I was amazed because when I caught the same thing the next day I felt so bad that even I was moaning all day as my stomach lurched back and forth like the tides of the sea.
Lucy is my wild child. Shes willful and dramatic, but a loving mommy to everyone and everything. She's determined to fight to the death on just about anything and ALWAYS questions authority. Her personality is so huge it usually precedes her through the front door and I am pretty sure a stranger can sense this child is a warrior. Its never been uncommon to see Lucy up all night with stomach pain and then get up at the crack of dawn to "attack" the next day with full steam. Its also never been uncommon to see her fall down, scrape her knee and then behave as though shes been stabbed through the heart until the moment someone offers her a lollipop.
I guess it was just the luck of the draw that I would get TWO polar opposite children with unique parenting needs. They both crack me up to no end. They pull me in different directions so hard that just when I think I cant do it, they swoop back in and pick me up with a huge hug and a kiss. I am lucky like that I guess.

Thinking, thinking, thinking

I have been trying to make my mind up as to whether or not we want to trail another food before Dr S. calls with her test results. I want to have a "firm and final" answer to give him, instead of being persuaded into one on the spot. There is a lot to consider and there is no right or wrong answer here. The bottom line- what is in Lucy's best interest- isn't even clear.
The only thing I AM clear on is that after this round of debate, we will be taking a long hiatus from any thoughts of another food challenge for at least a year. We spent the first two years of Lucy's life just trying to get her healthy and happy, only to take off a few months and go right into a challenge, take another few months off and bring us to date. I can accept that Lucy will have a very different life from the average person but what I don't have to accept is that its harder. For Lucy, life without food is just plain easier. We can try and try and try, fail and make life hard for Lucy or we can choose to accept things the way they are and go on with life- enjoying the playground, playdates, the sandbox, riding tricycles, everything a little kid does.
When we saw the world-known specialist last summer he told us that many of the families with children like this will often take off several years so that they can get on with life. They wait until their children are old enough to understand the risk of pain and misery and can help make a decision about what to do.
What I am unclear about is when to throw in the towel. Do we give this one more shot and then take a break, or do we just call it quits for a while now? I really don't know. I'd like to be able to tell Lucy a year from now that we gave it our absolute best shot but in the end her and food weren't meant to be friends. I also don't want to put her through any more misery than I have to.
I should have a few more days before Dr S. calls with her results, and I am sure until then I will continue to debate.

Clear as mud

That was a long visit. With drive time, waiting time, the appointment, blood draw, and checkout we were gone from 1:30 until 5:30 almost. By the time we got home we were both exhausted!
Lu fought the blood draw with all her little might. It took me and three nurses to hold her down and she SCREAMED so loud that the office manager came back to check on us because she assumed her employees must have been doing something wrong. Of course, she only discovered that my daughter just wasn't going down without a fight and the nurses were doing the best they could. I felt so bad for Lu. She was trembling and crying. We do these tests yearly or sometimes more and all I could think was, I CANNOT do this again.
We sat with Dr S for a while and discussed a LOT. I left not feeling 100% clear on anything, but I expected that.
We don't have much more in the option department to help Lucy's fragile and sensitive skin. She really is far above the recommended dosages for the medicine shes on, and we are limited on other medicines because of her belly issues. The current dosage does a good job controlling the dermatographism, but she continues to deal with all around weak skin. We struggle to find shoes that don't blister the skin on her feet and have to select outfits that are loose to prevent elastic waistbands from rubbing sores onto her skin. The heat often will cause her to itch from head to toe and the cold brings about bouts of Raynaud's that leave her in excruciating pain. Her skin has become an issue that affects a number of things we do with Lucy on a daily basis- the clothes she wears, how often she plays outside, etc. We decided that we are going to move her meds up slightly higher and see where we get, we are hoping and praying for an improvement.
We also discussed another food challenge. We try to do one every 6 months, this way she has time to heal and get back to baseline before we try again. We are shooting to start in September, once all the vacations and summer fun are finished. Dr S would like to see us try something else but leaves the final decision up to us. Its so hard to decide. I mean, really, is it worth it with such a slim chance? I don't know.
Dr S. decided that we would repeat Lucy's RAST testing (allergy testing on the blood) and see if that could give us any clues about Lucy's Do Not Try List. The RAST testing wont specifically rule in a food, just because the test says Lucy is not allergic to it doesn't mean Lucy wont still react to it. However, it will tell us when a food is out totally. If the test says she allergic to a food, then we know for certain it is out and we wont waste time on it. RAST testing looks for specific antibodies involved in an allergic reaction to food, but most of Lucy's reactions are what are called CELL MEDIATED reactions- stemming from eosinophils, T-cells, or Mast cells. There are no tests that will reveal foods that Lucy would have a cell mediated response to, the only way to rule them in and out is with a food trial.
So for the moment, we are waiting for her test results to come back before deciding what to do from here. Dr S mentioned a trial of chicken possibly next, but it all depends on her tests. He said they should be back within a week so hopefully they will give us some clues.

Tomorrow is August 5th

See the type of predicaments my precocious dear daughter gets into on a daily basis? She sat in the baby stroller(after being told not to because it would break and trap her inside) and it broke, folding her up inside. She had buckled herself in so she was unable to get out. I came in the room to discover her struggling to hold herself in the seated position to keep from being folded in half! She was mad as heck that I took a photo before helping her, but I thought it was best to document such stubbornness at an early age.
Tomorrow is August 5th, Lucy's doctor appointment. We go in to review her current situation, repeat testing, and decide if we will do another food challenge. I am dreading it to be honest and just want to get it over with. No matter what, whether we trial a food or not, its not going to be fun. If we trial a food we have a slim chance of passing it and risk a rocky few weeks of pain and suffering. If we don't trial a food then its the realization Lucy will turn three with no foods. Not that one food would make things seem oh-so-normal, but its progress nonetheless. Additionally, spending the afternoon with my daughter in a half nelson in order to draw 100 vials of blood is no picnic for anyone.
I will update tomorrow night after the kids go to bed!
*I discovered Twitter the other day and have been trying it out. I can update from my cellphone and have it appear on the right side of this blog. Its kind of cool, not sure how useful it will be, but I will keep it for now.