Happy Friday

Well all in all it has been a good week for us. The kids seem to be healthy and I am noticing a change in Layla. I feel like she is happier and I am starting to notice more milestones with her as well. She decided to sing Happy Birthday in Church yesterday and it was quite ironic because the whole reason we were in Church was for my Mama's Birthday remembrance. Hmmm is she in tune to Mama or what? Maybe because they share the name Viola? Anyhow it was a hoot to hear her sing as it goes something like this, "Happeeeee Dtoooyouuuu." Speaking of remembrances of Mama, my Hannah had gone upstairs to change her pants for Church because she had spilled water on them. She came downstairs in a whole new outfit and upon me asking her why she said, "Well I know it is Mama's Birthday so I wanted to wear something with butterflies for her." Ahhhhh These are the times where my heart literally bursts with love for my girls. These are the times when I realize how very fortunate I am to be a Mom.

I am glad that it is Friday and we have another fun filled weekend ahead of us. Birthday parties and Baby Showers! I am also looking forward to spending some time with my friend Shannon this evening as she continues to fill my brain with all the wonderful aspects of Photoshop & Lightroom. She is my mentor and I, humbly her apprentice! HA! Maybe someday.. I will be able to do something with this passion. Until then, I will continue to learn all that I can.. or as much as my sleep deprived brain can handle.

I will leave today posting the lyrics to one more of my favorite songs by Kenny Chesney. Although the days can sometimes be a struggle and the nights long and sleepless, THANK GOD FOR KIDS!

If it weren't for kids have you ever thought

There wouldn't be no Santa Clause

Look what the stork just brought

Thank God for Kids

We'd all live in a quiet house

Without Big Bird or a Mickey Mouse

And Kool-aid on the couch

Thank God for Kids

Thank God for kids there's magic for a while

A special kind of sunshine in a smile

Do you ever stop to think? or wonder why?

The nearest thing to Heaven is a child

Daddy how does this thing fly?

A hundred other where's and why's

You really don't know but we try

Thank God for Kids

When you look down in those trustin eyes

That look to you, you realize

Its love that you can't buy

Thank God for Kids

Thank God for there's magic for a while

A special kind of sunshine in a smile

Do you ever stop to think? or wonder why?

The nearest thing to Heaven is a child

When you get down on your knees tonight

To thank the Lord for his guiding light

And pray they turn out right

Thank God for Kids

Thank God for Kids

Congratulations to all those babies born this week and looking forward to more in the coming weeks! Welcome to the world Grant and Chloe!

Skip's Update

The Skipper has epilepsy. This is probably going to sound strange of me to say, but what a relief! I think all of us were afraid that it would be worse. Epilepsy can be treated and with the proper medication, it can be controlled. Oddly enough, they are finding that epilepsy may be linked to gastrointestinal issues and Celiacs.. and anyone who knows Skip, knows of his gastrointestinal issues! He sees his doctor today and will have more information then.

They say the lights are bright on Broadway!

What a whirlwind fun-filled weekend we had! Friday night we headed to my Uncle's 40th birthday celebration and we dropped the kids off at Auntie Leanne's and Uncle Dan's house. They had a blast playing with their cousins and Dan and Leanne survived watching 4 kids! Saturday morning we went and ran all of our errands and then we were off to Olivia's birthday party at the Little Gym. The girls thoroughly enjoyed themselves and even little Layla enjoyed keeping up with all the 4 and 5 year olds. She was a trooper testing out the balance beam and jumping all about. Hannah realized how much she missed dancing and I really have to get her back into some sort of dance class. The kid certainly has some moves. (Put that on my to-do list!) Saturday evening Leanne and Dan moved the party on over to our house and dropped off cousin Arielle and Addison so that they could attend a 30th birthday celebration. The girls were excellent. Layla had already gone down to sleep and Miss Addy went right down as well. Arielle and Hannah played dress up and Candyland before I read them a story (Snow White as requested by Arielle) and off to bed for them. (I can totally do 4 kids!) They both went down in Hannah's bed and I put the monitor on so I could hear them. I have to say, the conversations were hysterical! Billy came home from hockey and the two of us had more laughs listening to the two of them converse.

Yesterday was a big day for us again. Auntie Paula, Leanne and I took Arielle and Hannah to go see Chitty Chitty Bang Bang. What an amazing Mommy moment I had being able to share this experience with Hannah. It has been a long time since I have gone to see a show and it was so great to have a daughter to share my passion with. The girls dressed in their best and completely took in the whole experience. They were both so good and much fun was had by all. I am so excited to be able to share so many more experiences like this with my two daughters. As a child I had always wanted to star in Broadway and since that ship has totally sailed, I am thinking that maybe one of the girls will share this passion and possibly do something with it. We shall see.

Still waiting on test results from the Skipper...hopefully he will have them today.

HAPPY BIRTHDAY AUNTIE PAULA~! xoxoxoxoxo

Life has been a bit chaotic recently to say the least! Lately I am not sure if I am coming or going and just when I think there is a light at the end of the tunnel.. wham! LOL I know that "this too shall pass" and I am hoping that a good night's sleep tonight will help brighten my spirits.

We heard from Layla's Boston Dr. again the other night as he had called to let us know that he sat down with the pathologist to go over the biopsy results. The biopsies did show that there was microscopic infection however, it also showed that her intestine was regenerating (making new cells). This means that her intestine is healing itself. Therefore he feels as though she had some sort of intestinal infection that has taken her system a long time to recover from, but she is recovering. Though this is how he feels, he also wants to rule out a few more things such as a parasite or an immune system disorder. These tests will probably get done the beginning of next week and thus hopefully we can rule them out. I felt good after talking to him the other night. However, that being said, I am not wholeheartedly sold on this idea. There is something in me that keeps telling me I should push for the colonoscopy. I dont know what or why or anything more than it is this little voice inside my head. I dont want to overreact so I am trying to ignore it, but at the same time I dont want to under react and have the situation get worse. What to do? She still isnt acting right and literally screamed for 45 minutes this morning. Then she had a BM and she was fine? Do not read anymore if you get grossed out but the BM was black and tar like? On Sunday she had one that literally looked like grey clay? I have a call into my Pediatrician to discuss test results and whatnot and I am thinking about bouncing the colonoscopy thing off her and see what she has to say. Furthermore, Layla has a nasty cold and she is just miserable on top of everything else, although I did finally get her to go down for a nap! That's a plus!

Dr. Verhave also wanted her to have a food allergy skin test done which we did yesterday. (Not so much fun) If you remember, she had the blood tests done to show allergies and they showed that she was allergic to soy (moderately) and peanut (moderately) and it was also certain that she had the milk protein allergy as well. Yesterday's results showed that yes indeed she is allergic to soy moderately as well as oats (who knew?) but that the peanut allergy is severe. (Can you imagine if I hadn't done this testing?) Severe enough that the doctor felt as though when we had the incident back at Halloween, that she never actually ingested the peanut butter because if she had, he felt as though we would have been in a more severe of a situation. So if her face and lips blew up and welted just from touching it, can you imagine if she ingested it? SCARY! It's easy to keep grips on it at home because we are a peanut free home, but this could get a bit tricky when she is in other people's care and when she is school age. I know I'll be a basket case about it. Needless to say we have the Epi pen on us at all times.

This is what her back looked like after the testing. The smaller swollen area is the histamine that is supposed to be what they check the others against... The huge one is the peanut. Much larger than the histamine. The nurse actually said it was off the charts.

I am glad to announce that Miss Hannah seems to be healthy these days. She has taken a liking to scrapbooking and has begun to scrapbook pictures of her and her daddy from their father and daughter dance she had. I have to say, she is pretty good at it. Give the kid a pair of scissors and let her go to town! I will add that every time I put them in her hands I have to give her the speal about how if she touches her hair with them I am shaving her head. Her teacher told me again this week that Hannah is a pleasure to have in class and I am grateful that she saves her antics for home, rather than school.. HA! She is also still faithfully wearing her furry boots to school and has not given me a problem since I bought them. RELIEF! Problem solved! Soon enough the Spring will be here and she can wear her flowy dresses and flip flops and the harmony will be restored in our household!


On a down note, what's bugging me the most this week is that my dearest and bestest friend Skip suffered from a grand mal seizure on Sunday. Getting this call really knocked me for a loop. He had an "episode" back in December during the night yet it was never actually confirmed to be a seizure. So this whole situation is extremely scary. I thank the heavens above that his wife was home. Although I am sure he took a good 5 years off her life and I truly cant imagine how scary this was for her to witness. I am so grateful he wasnt alone. His neurologist is saying that he is most likely out of work for at least 6 months and he is not allowed to watch his daughter alone, drive, or do anything alone for that matter. This is pure torture for any human being. Yet if you knew Skip, this is beyond pure torture for him. I feel helpless and lost. I keep frantically trying to find a way to make this all better but the truth of the matter is that there IS no way to make this better. We just have to pray that he can get answers, and pray that the answers will allow him to lead a somewhat normal life and allow him to live a long life. We have been through the good, the bad and the ugly as friends and I pray that this is just another bump in the road. My head is spinning and if I go into any further how this affecting me then I'll lose it, so I will end it there. Please keep Skip and his family in your prayers in this time of need! I will update soon.

Back at one

It seems as though we are back at one with Layla. To say I was bummed yesterday with her results is an understatement. Again, do not get me wrong, I am thrilled that it seems as though she does not have Celiac's Disease, but I was also hoping that the biopsies would show something more definitive so we could treat it, get this baby girl feeling better and move on.

What the results did show was that she has microscopic inflammation. Which certainly means that something is up and we are not crazy, but the answer to "what is up" will take more tests, more appointments and therefore more time to figure out. I am pretty disheartened at this although I will plug forward as I am determined and committed to figuring this all out for my Layla cakes.

Microscopic inflammation can mean several things including that she could have an infection that just cant seem to get better. Or that she could be getting frequent reoccurring infections. He seemed to think it was more of the frequent reoccurring infections because we have been dealing with this for so long.

On a positive note, the blood work and biopsies showed that she is getting nutrients (relief) yet, her body is still not absorbing everything. He also mentioned that this could be affecting her moods as although we are feeding her constantly, if her body isnt absorbing everything than she is not getting the "full" feeling and may still be hungry. I am determined to tackle this head on as she is a tough eater and usually turns her head up at most food or will take a few bites and be done.

Being that the Dr. feels as though this is a reoccurring infection, he wants to order more blood work as to see if it could be an immune system deficiency. Her IGA levels from her blood work are still off and this would indicate and immune system issue.

Also we need to see a nutritionist to try and beef up her calories and maybe add a supplement to her formula to get the high caloric content in. In essence we need to see if we can get her to gain weight without totally blowing up her stomach and causing more uncomfortableness.

I spoke with her pediatrician last night and she is recommending that we see another allergist as well to get more definitive test results by doing a scratch test instead of just blood work. She, like myself, also feels as though a colonoscopy may be scheduled in the near future judging from her symptoms and her frequent belly pain and night awakenings. I mentioned this to Dr. Verhave as well however, he thinks we should do step 1 and step 2 before putting her through the evasive test of a colonoscopy although it was something he felt we should be considering after step 1 and step 2.

So what does this all mean? AHHHHHHHHHHHHHH! We are back at one without an official diagnosis and without a way to make this all better!
I have the allergist appointment scheduled for next Tuesday and I am waiting to hear back from the Boston Nutritionist. We have increased her Zantac and her gas drops and we shall see if this makes a difference. I will say that she woke up several times last night and was able to put herself back to sleep quickly. Only twice did I have to help her and both times it was less than 5 minutes and she was back to sleep. This was so much better than the past several nights of her waking up at least once an hour.

I am completely determined to get to the bottom of all this and I do have faith that we will. I think that the lack of sleep has added to me being a bit discouraged but I do know that better days are ahead and this is just another bump in the road in the journey of Motherhood.

xoxoxoxoxo

and the time flies by, ever so quickly

Well we embarked on yet another major milestone this weekend. Yes, Miss Hannah had her very first date. With Daddy that is! Her very first Father Daughter Dance. I really can't believe the time has come for my bitty bean to be grown into a little lady. Seriously! This kid was born at 5lbs only 4 and a half very short years ago and there we stood Saturday night as Daddy put a wrist corsage on her. You bet your stars that Mommy was hysterically crying!

It seemed almost surreal to me as the girls played in the yard only hours before in the warm weather. Hannah was a filthy mess, hair all a strew. We gave her a shower and glammed her up and in less than an hour she had transformed into this timeless beauty. She literally took my breath away. Never before had I seen her look so grown up and so beautiful. I snapped as many pictures as she let me get away with and then I sent them on their way.

I think Billy was just as excited to share this special first with her as well. He looked so dapper all dressed up! He said he had a great time watching Hannah flit all about the dance floor. He got an even bigger kick out of her begging him to dance with her once "Somewhere Over the Rainbow" came on. Billy also said that Hannah was the best dressed and I have to thank Auntie Melisa for that. Once again she saved my butt with the beautiful dress!

I decided to have my own "date night" with Miss Layla and we headed to Michaels to finish some of our secret crafts that we are doing. Then we hit Panera where the kid was literally the talk of the place. I cant tell you how many people came up to me to comment on how beautiful she was from her posture to her big brown eyes! It was really nice to have so many people pay attention to her. It truly warmed my heart.

Now I must make the phone call to Boston to see if there are any results back on Miss Layla... more to come.. I hope.. but I will leave you with some gorgeous pictures of my beautiful girls...

This picture was to prove that I did not force her to wear tights!

This was her KitchenAid Mixer pose! LOL

Layla

Yesterday was Layla's endoscopy up in Boston. It was quite the crazy morning! We woke up to a total whiteout and Hannah's school was canceled. Billy had to go into work and I was left wondering how on earth I was going to trek it up to Boston on my own in such horrible conditions. Thankfully, Grammy came to the rescue with Hannah. We headed over to Grammy's at 7:30 to drop Miss Hannah off and by the power of the man above, Billy was able to leave work and drive us up to Boston. Thankfully, once we got on the road, it wasn't nearly as bad as we thought it was going to be. This is not to say that we didnt see cars stranded off the road every few miles, but I will say, the road conditions were a LOT better than I had expected and most people stayed off the roads, which also helped our commute in.

Layla did great! I was so worried that she would be so upset over not eating, but we seemed to keep her entertained enough so that she didnt think about it. The GI procedure unit was fantastic (as we expected) from the nurses on up to Dr. Manfredi who performed the procedure. Everyone was so kind and accommodating. They all fell in love with Layla (as it is difficult not too). It was a bit surreal for me to hold her and watch her go under anesthesia as it had been me with Hannah so many times before, but I was prepared and fared well.

It seems as though she carried her big sister's trend for coming out of it though and she had quite the time. Thankfully we had told the anesthesia doctors that this could be a possibility due to Hannah's reactions to it and they were able to give Layla morphine to take the edge off. About an hour and a half later, she woke up just fine and was back to being Layla again.

Dr. Manfredi came out to talk to us right after the procedure and informed us that the procedure had gone well and her villi looked normal as did everything else. We were relieved and yet confused. (If that makes sense.) Dr. Verhave seemed to think she was showing all of the classic symptoms of Celiacs, however, if the villi isnt damaged, then I highly doubt that this will be the diagnosis... which puts us back at square one again. Although he did say that the biosies are the only sure fire way to detect Celiacs. Dr. Manfredi did say that he took a bunch of biopsies, including one in the stomach that would let us know if she has troubles digesting enzymes. So now we just have to hang tight and see how the biopsies come back and then go from there. This should take 5 to 7 days.

Although we are a bit confused, I have complete faith that her doctors wont stop until they get to the bottom of whatever is going on with Layla. I sure dont want to sound as if I want her to have Celiacs, because that certainly isnt the case and I will be relieved that she wont have to have those diet restrictions for the rest of her life, but at the same time, I am sort of disheartened because I want a diagnosis so that we can treat it and move on! I will remain positive however, and hopefully we will get some answers soon.

We came home to a nice homemade dinner thanks to Grammy and Grampy and we all headed home to sleep our crazy day away!