Showing posts with label Celiac Disease. Show all posts
Showing posts with label Celiac Disease. Show all posts

Sunday, January 29, 2012

"Eight Weeks", Alternately Titled, "Crying"

 Sweet Pea is eight weeks today.  She is 22 inches long and weighs 9 lbs 6.5 oz.  Not great weight gain this week, but she and I (and Snug and #1) had a stomach virus so it isn't surprising she didn't have great gain.

The older Sweet Pea gets the harder she has been.  I've mentioned before that she is "fussy".  That is just being polite.  She has been demanding, angry, and cries ALL THE TIME.  It has been especially hard the last two weeks.


 LMM was very similar as a baby, and I decided to try something.  When we found out that he couldn't have wheat/gluten and discovered how much better he felt when he didn't have it...we wondered if that was why he was such a difficult baby.  Maybe he just didn't feel well.  So as of this past Thursday, I am gluten-free.  Although gluten in my milk shouldn't affect her growth till she starts solids (then if she did have a gluten allergy she'd drop right off the charts like LMM did) it could make her really uncomfortable.  If she indeed cannot have wheat the likelihood that LMM (and she) have Celiac disease goes WAY up.

*Side note, you can see her diaper in this picture...she is almost totally cloth diapered now and you can see a post about it that I wrote for The Cloth Diaper Whisperer blog here.  There were quite a few grammatical errors I realized later...sorry.
 I noticed an improvement in her Friday night and all day Saturday.  Saturday night she was fussy, but most babies are in the evening.  There was such a difference in her Snug even thanked God when praying for dinner that "Molly stopped crying".  It was getting hard for everyone in the house.
 I don't know for sure that wheat is the culprit.  We'll see what the next few days are like.
But we hope not to see a whole lot more of this.  

Thursday, April 29, 2010

Four Five Updates

I will give as brief of a catch up as I can to what we are up to. My update will not include photos, but everyone else will. I am doing fine, very busy (more about that later) and trying to master the art of nursing. You'd think after two other children it would be easy...it isn't. I remember giving the advice to other new moms..."give it 3-4 weeks". Now I am repeating that to myself many times a day! Other than that I feel pretty good and have lost almost all of my pregnancy weight. Not sure if that is a good or a bad thing...nursing mom experts, please help me out in this area!!!

Rosebud is now two weeks old. She weighed in yesterday at 6 lbs 13 oz. What a chunk, huh?
She enjoys tons of attention from both brothers. They dote on her and love her quite a bit. She has been spitting up frequently, which is new for me with a newborn. Perhaps some of it is all the "love" she gets from her older siblings.

She got to meet her Pop Pop for the first time. He of course loved her.

Look closely at the top of her head. This is her hair when wet...and she has curls! I won't get my hopes up that they stay, but I am enjoying them for the time being.
She has also started looking directly at me and smiles when I talk. I can't get a picture of it, because it is so fast, but it has happened several times!

Little Monkey Man loves loves loves loves loves Rosebud. Loves her to death. At least that is what we are trying to avoid. She is his current #1 object of affection. Kisses and hugs galore. Lots of pointing and grunting and smiles directed her way. I know, I know with the hair. Currently LMM and I are picking our battles. Sock wearing and pony tail flaunting are not ones I am going to fight. Food throwing, hitting, and screaming are worth fighting. Basically if we've had a little girl here (and with visitors, there have been several)

Excuse the laundry pile in the background, I am lucky to be blogging. Things just are kinda overwhelming right now. Laundry, meals (thanks to my Bible study, dinner comes every other night and is a HUGE blessing), diapers, and nursing take up 99.9% of my time. Here is a picture of LMM pointing out things he loves about his new sister. I was taking a picture of him kissing her, but he is almost always too quick to photograph. I didn't know he was going to get a hand on her face quite so quickly!

I really like this picture. You can totally see how happy he is with her. When he comes around, her eyes get very wide...and worried. On Tuesday he had a GI appointment and the results of his genetic testing were in. He does NOT have Celiac disease, and as far as I can tell never will because he doesn't have the gene. Praise God! He has gained back all of the weight he lost with the diarrhea, and has a diagnosis of "Wheat-Gluten Intolerant". His diet change has seemed to fix the problems we have been having, and he is in the 50 percentile for his weight. I think he is quite heavy enough, so heaven help the 50 % above him in weight :o) I can hardly lift the boy!

Snug enjoys being out in nature, and while daddy had LMM out and about today, and while Rosebud was sleeping, he and I shared some time in the backyard.

This was today's project. He had to examine all of this caterpillar's features, describe to me every book about caterpillars he has ever read, and find leaves for it to eat.

He had a great time!


Other current hobbies are watering the flowers he and Grandmommy planted, helping me weed the flowerbeds, and watching his sister nurse. He likes to be right there and tell me about a billion times just how cute she is. I'm glad he (probably) won't ever remember her nursing, because I'd be a little self conscious. On the other hand, he remembers Little Monkey Man nursing, with detail. So maybe he will. Oh well, it happens way too many times a day to go lock myself in her room.

This picture turned out blurry, but swinging and sitting in the sandbox take approximately 3-4 hours of his day. I can't wait till he learns to "pump" and push himself!!!


What has #1 been up to? Well, besides helping with another man hunt (elderly dementia patient escaped from nursing home) in the city we used to live in, he has been very busy doing things around the house and yard, working, and campaigning for the upcoming levy. He and Little Monkey Man were out for a couple of hours today asking people to vote. His department will lose everyone under him in seniority, and even possibly he could lose his job if the levy fails. Always exciting.

But being that it is his day off and we have beautiful weather today...he is currently doing this :o)

And so is Snug.

Which kinda takes the relaxation out of it for daddy...but still some time in the sun is always fun!
So that is what we have been up to. Rosebud is sleeping, the boys are busy with daddy, and the laundry is (almost) done. Now I will go try and catch up with what all of YOU have been up to! I miss reading your stories!

Wednesday, March 31, 2010

One Year Anniversary



Today marks the one year anniversary of Little Monkey Man (formally known as Baby J) getting free therapy from our county. The link below is from March 31, 2009. Take a minute to read it if you can. It really shows how far our little miracle has come.

http://thedraystoday.blogspot.com/2009/03/baby-js-therapy-session-1.html

Getting a picture of him is very hard...in the high chair seems to be the easiest time...don't mind the messy face!


This morning we also had therapy. We. This is not all him, this is about all of us. Today is very different from our first day. Instead of OT, PT and speech, he is just got speech (his sign specialist was sick)with a speech therapist. He has discontinued OT and PT. But it is also different because my attitude is different. No matter how long it takes, we will keep working with him and keep trying to help him become the best he can be. And he was a pistol. Working with his personality (strong willed) and his SPD* and then figuring out the speech/communication end is very tiring.

Yesterday we also went back to start Celiac testing...again. Yeah, seems like March is the month for that sort of thing and our family. Must be St. Patrick's Day. I say that because Celiac runs in families who have Irish heritage more than any other. So some blood was taken to determine if Little Monkey has the Celiac gene. I can't believe that test wasn't done last year. Seems pretty easy to me, but I'm not the dr. If he has the gene, then we do blood tests and then probably another EGD (surgery). If he doesn't have the gene, I don't know what that means. I guess I don't ask enough questions.

I just know that for either the blood tests or EGD he has to go back to a "normal" diet. I told the nurse on the phone I am not doing that. Not right now. We have enough on our plate without dealing with diarrhea and a grumpy uncomfortable boy. If it isn't Celiac, we are 99.9% sure he is wheat-gluten intolerant. But if he is a Celiac, we really do need to have the diagnosis. But we are way more optimistic than last year!



You've come a long way baby!

*Sensory Processing Disorder

Monday, March 8, 2010

Tentatively

We tentatively believe we have an answer for all the bowel trouble Little Monkey was having. After weeks of yuck and stink and rash and things you don't want me to blog about...things are looking much better.

We have taken Little Monkey Man off of: Wheat, barley, malt (yeah, you KNEW he was a big drinker, but we are trying to curb the habit), rye, modified food starch, hydrolyzed vegetable proteins, hydrolyzed plant protein, oats, textured vegetable protein, semolina, durum, spelt, kamut, einkorn, faro, and triticale. Don't ask me what some of those are, I haven't a clue. I just read labels for them.

We also took him off of soy, rice, potato, corn, and bananas and will re-introduce them slowly. We knew as of last Thursday that things were looking up...but didn't want to get too excited. We are still very tentative but hopeful. There was a time where we really thought that dairy was to blame, so that is why we continue to be tentative.

He does not have an official diagnosis of Celiac disease, although we really do suspect that is what is going on. He may be gluten-intolerant instead. The diet is the same so it really doesn't matter. It can take up to 9 years to get an official Celiac diagnosis...and it really doesn't change anything. There is a chance if it is gluten-intolerance that he could outgrow it.

We are just thankful that he is feeling better (ok, other than the tremendous cold he has with a fever of 103) and things are looking up. Thank you so much for praying for us, we'll continue to ask God's guidance in this situation.

I hate doing posts without pictures, so here are a couple on a TOTALLY unrelated note that I took over the weekend. I love when they sit together and do something...anything...together. There is lots of sibling rivalry right now. Mostly because Snug wants to be the boss/mother/babysitter of Little Monkey and Little Monkey is exerting his independence. The mess behind them on the rocking chair is a stack of hand-me-down clothes I was going through that some very gracious friends gave us for Hannah. There was so much really nice stuff for her and we are so blessed.
And here is my little model (I wanted to see how big Hannah would be when she wore this). He will kill me someday. His daddy will kill me if he reads this post. His Uncle Nathan is sure to have something to say about it. And I think he is just too cute! Glad that he is a boy though, and glad I am having a girl! This dress actually isn't my style* but it is in great condition and we will use it-Easter 2012? I think I probably had one just like it when I was growing up :o)

*I am not a big lace and fluff fan...I can remember not liking to wear lots of frills when I was little. I had two BIG no-no's for my wedding dress. No lace, no big bows. However, if Hannah loves to wear lace and foo-foo I will totally let her. I can't WAIT to have a girl!

Tuesday, March 2, 2010

Just Another Tuesday? NEVER!

Tuesday can be such a "blah" day. Monday gets to be the day everyone dislikes because it marks the end of the weekend/beginning of the work week. Wednesday (for us) is library and church. Thursday #1 has off and we enjoy the evening together. Friday of course starts off the weekend. But what about Tuesday? Aren't Tuesdays just...forgotten?

Awhile back I had a post called "Just Another Tuesday? Never!" and whenever something 'interesting' happens on a Tuesday, that is what I call those posts. Because I feel bad for Tuesdays.

This week in preschool, Draycare style, we are doing the letters "v" and "w". To go along with the letter "v" I decided we should go visit a veterinarian. We happen to be living next door to a vet, in fact renting from a vet. I called them up to make arrangements and the secretary informed me that school children under 18 were not allowed to have field trips there due to the fact that they could get hurt. School children under 18??? How many are over 18 out there? I know there are some, but really...?

Ok, so I'm sure I could have called a few more vets, but I happen to know the vet in charge of our county animal control. I serve on a steering committee for our county parks and rec that manages/does fund raisers for our dog park, and he is also on the committee. I called them next. We were assured that we could visit, but they were not sure what all they had to offer. Being that we are 3 & 4 years old, I told her we were not expecting too much :o)

I also talked to Doc B. last Thursday about it and he seemed excited to have us come. He mentioned that the kids could pet some animals and listen to their heartbeats through a stethoscope...that sounded just our speed.

The kids were very excited to visit the vet, and we even had to make a quick stop at ALDI (more on that later) and we picked up a box of doggie biscuits. A little "thanks for having us". We pulled into the lot and we had our usual "be polite, be quiet, don't touch unless told it is ok" speech. Everyone was ready to go inside and see what a vet does. Oh my were they going to find out.

So we get in and a nice lady takes us back to pet a friendly kitty. We talk a bit about how these kittys don't all have homes and people will come adopt them. We talk about the litter boxes, water dishes, etc. Then in comes Doc B. He is excited.

We are here just in time he says, he has just put a dog to sleep. I about wet myself. The kids just stared at him. I should have taken a camera, but I forgot...and we really need to keep this blog G so pictures today...not to be posted if I had taken them. He then told the kids the dog was just sleeping, because he was going to have surgery *WHEW*! I was relieved beyond what you can imagine.

He said we could watch the surgery so we all trooped back into a small room where a Pomeranian was laying very dead like on the exam table. The smell was...not great. It was very warm. Doc then proceeded to tell us he was going to neuter this dog. Yep folks, my home daycare/preschool class got to witness firsthand a dog being neutered. Doc explained that this kept the dog from being able to produce more puppies that wouldn't have homes. The kids thought it was a good idea for all puppies to have homes, so he proceeded.

Before I tell you exactly what went on, I have to say I nearly fainted for what I can remember is the first time in my life. I've stood up too fast and blacked out...but this was different. This was everything going swimmy...gray....back to color...sweating like crazy...and thinking I might vomit. I had to leave the operating room and go sit down. I am not squeamish, but I think the heat, smell, and procedure which you will now read about got to this pregnant woman!

The kids watched him scrub in, shave the dog, got an explanation of sterilization of instruments, saw him CUT THE DOG OPEN, remove the testicles, and sew him back up. Then they were introduced to vaccinations (which were given), paperwork, and saw him be microchipped. Then the dog started to wake up and was put into a recovery kennel. I kid you not, that is what the vet had planned for our preschool group. So what did you do this Tuesday?


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On a totally unrelated subject we had not one but 2 doctor's appointments for Little Monkey Man yesterday. He does not have food allergies, but the second doctor isn't convinced that Celiac can be totally ruled out. Evidently the average person who is diagnosed with it isn't diagnosed for 9 years after the symptoms start. It just takes that long to get a positive test. He wants us to put him on a gluten-free diet (including corn products/soy/and oats) for a few weeks and see what happens. If nothing, well then keep looking for something. If his diarrhea clears up, we have an answer. He could just even be wheat intolerant but until we clear it TOTALLY out for awhile we won't know.

So we stopped by a couple of grocery stores (after I did research online along with reading all the doctor's paperwork) to see what he could have. At home we had eggs, bacon, raisins, apples, and carrots. Somehow I thought he needed a bit more in his diet.

This is what we bought. Wheat is in EVERYTHING. If he is lactose intolerant as we suspected before, he is in big trouble because a big part of a gluten-free diet is dairy related. So far no improvement today in diapers...but we know it will take a few days. If the GI doctor was right and his gut just needs to heal, this is also a high-fat, high-protein diet...and he is eating his probiotics daily. He is also back on PediaSure to ensure that he is getting enough calories. I never thought I'd be buying that stuff again. Oh well! Thanks for your prayers, we appreciate it-we know God has big plans for this boy!

Monday, March 16, 2009

Esophagogastroduodenoscopy REVISED

***Update at the bottom...scroll down...***

Um, yep. That's what he had today. They call it an EGD...but isn't Esophagogastroduodenoscopy fun to say type? Ah, what a day it was. Too bad it wasn't a Tuesday so I could have my title be "Just Another Tuesday? Never." like I so love to do (because it seems like so many things happen to us on Tuesdays)...but Esophagogastroduodenoscopy is a close second, don't you think?

I digress, serious rabbit trail.

When Baby J woke up this morning he was in a bad mood. He wasn't allowed to eat anything, and if you've ever seen that boy eat, well...his mood wasn't pretty. He is now feeling much, much better from his flu* (we'll discuss that later) and wants to eat lots. Since his procedure wasn't scheduled until 4:15 pm they decided he could have Pedialyte until 11:00am, so he chugged 18 oz in 2 hours. Amazing.

I have to admit I was very nervous. Kinda sick to my stomach. I really appreciate all the Bible verses that were sent my way. It was hardest sitting in the pre-op room waiting and waiting. The staff here is so nice. A nurse was kind enough to tell me almost all the moms cry in the pre-op room. The operating room (OR) nurse had someone else come in and take the bed he was going to be on into the OR so he could personally carry Baby J over. That made me happy to see him happily sucking a paci as he went on an adventure with a new friend.

The Esophagogastroduodenoscopy procedure went well and only took about 20 minutes. Dr. K came in and told us how it went before I had even finished 2 chapters in my book (Which was purchased on June 27, 2008 by our library. It had a date stamp in the back...and that happens to be Baby J's birthday. Wow.).

They took pictures of Baby J's esophagus, stomach, and small intestine. We actually have some of the pictures for his scrapbook. They took several biopsies of suspicious areas, and the results of those won't be back until Wednesday. However, Dr. K said she is pretty sure he has Celiac Disease. I twittered that, but it didn't show up on my blog. She said she can't tell us that 100%, but that she has been doing this for over 2 decades and she knows what she sees, when she sees it. She is pretty sure that is what we are up against.

He has an Upper GI tomorrow morning at 8.

Snug was here playing hide-and-go-seek today and a friend of ours from church visited who happens to be in charge of the residents who are watching over Baby J. I know the big boss. Nice :o)

Well, I can't remember anything else to write...thanks for reading.

***REVISION***
I forgot to comment more on the 'flu'. Dr. K said he may or may not have had an actual bug. Sometimes (again IF he does indeed have Celiac) it will present it with flu like symptoms as it progresses to the next stages. Good to know, good to know.