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!

Monday, March 2nd

Just a quick update to let you know that this morning by 9:30 am, BCH had called to schedule her endoscopy for this coming Monday at 11:30. Talk about prompt service! I cant say enough good things about this hospital!

Relieved and Hopeful

I am relieved and hopeful. We are back from Boston Children's Hospital and once again the treatment we received there is second to none! Dr. Verhave was absolutely fantastic and I truly felt comfortable with him treating Layla. I will tell you that after strike 2 with Hasbro, I will no longer be going there and I plan on telling my Pediatrician this upon my next visit.

Here is what transpired with the visit. Dr. Verhave believes that she is showing all of the classic symptoms of Celiac. Her weight dropping, the fact that she has skinny arms and legs and a distended belly, and of course the uncomfortable fussiness. He also feels that the bloodwork that was done, showed certain signs that SHOULD HAVE given Hasbro the heads up to do more bloodwork. There is a certain level in the blood (for the life of me I cannot remember the 3 letter abbreviation he used and I should have written it down) that should be at a certain place. Layla's is on the low end which is usually what one would see if they have Celiac's Disease. If you remember correctly, the first bloodtest that was done on Layla came back very high for Celiac's the second came back negative. In Dr. Verhave's opinion, this means the tests were inconclusive... not to be confused with negative. The only true way to tell if a person has Celiac is to have an endoscopy done in which case they will take cells and send them out for biopsy. His office will be contacting me within the next 2 days in order to schedule this test for the next week or so.

I will also add (and I apologize for the angry frustration here) that he looked at me and said, "After these blood tests nobody went any further with this?" To which I replied, "No, they suggested the wait and see approach and hence the reason for me coming here." He said that he was surprised that Hasbro didnt do any further testing and I told him, that I wasnt surprised that I should have began with Boston to begin with.

So we shall see what will transpire. He did say that if she did end up being negative for Celiac's he wouldnt leave me high and dry. That most likely she just has a severe allergy to certain foods and we may have to muddle through to figure it out, but that we would figure it out.

So where we stand now is an endoscopy and we will go from there. I am relieved, happy and so glad that the appointment finally arrived. It was a bit surreal to do the drive again as it has been so long. Yet, once I was on the road, all the memories of my sick Hannah came flooding back to me. I tried to explain it all to her, of course she couldnt remember a thing, but it did feel good to explain that connection to her. To let her walk the path that we took to get her on her road to recovery. Thankfully she doesnt remember it, but at the same time, I want her to know what this hospital did for her and I will continue to drill that into her tiny head. I will never forget and I will always be grateful and give back to BCH.

I am signing off for now as I have a sleepy little Layla wanting to go nigh nighs. Til the next post and Happy Birthday dear Jay. This date not only was a significant one for me to get through for Layla, but it also let me know that things would be okay because you are watching over us from above on this which would have been your 30th. Balloons to heaven my friend! I'll meet you at Gillians someday! xoxoxo

Monday Monday

Well here it is Monday and I have to say that for once, I am happy to be back into the routine of things. Our lives have been so hectic these past few weeks that I am actually welcoming this Monday morning to be back at work and I hope that as the week goes on, the rest of the clan will fall back into our working routine. The flu certainly knocked all of us for a loop and no sooner did we start to feel better, we were hit with round 2. The girls are still having some lingering effects as Layla got it the worst. Hannah just seems to be suffering from the chest cold part of it. Both girls are currently laying down in my office and I am certainly appreciating the quiet time! Correction, they are both fast asleep and it is only 9:00AM! I am in shock!



I will say that I am ever so looking forward to Spring and the warmer weather. If not for my state of mind, than for Hannah's. I was smacked back to reality this morning when it came time for her to put her shoes and socks on. Her tantrum lasted just short of an hour and I will say that at one point shoes and socks were flying towards my head. She is so strong willed it is incredibly insane! She hates shoes and socks and anything the least bit restricting! Spring and summer prove to be so much easier for us with wardrobe! She'll throw on a dress and flip flops and there are never ever any arguments about her getting dressed. During the winter however, it is a battle to the end!



Tomorrow is a big day for both Layla and for my friend Shannon. Shannon is saying good bye to her ovaries and hopefully her cancer for good. I know it is an emotional surgery for her and I am sending her well wishes and a great big hug. I had wanted to visit her over the weekend, however, I didnt think a gift of germs would be the best for her at this crucial time.



As for Layla, her appointment with the Boston GI Specialist is tomorrow. I am trying not to get too hopeful as I know this is only our first appointment and I am sure I wont get any answers in one day. However, I am looking forward and truly praying that this doctor treats her proactively as I am tired of sitting back and waiting.. and waiting and waiting. Things still are not on course with Layla and although the formula is helping tremendously, it is also where I firmly believe she is getting 99.9% of her nutrients. She can not possibly solely rely on this formula for the rest of her life so we need some sort of plan of action. Also, I want to know what her intestines look like, bottom line. Trust me, the last thing I want to do is put this baby through a colonoscopy, and the mere thought of the preparation for it scares me to death. Yet, at the same time, my gut is telling me that someone needs to look at what damage has been done to her intestines. I would find it hard to believe that a child that has had severe and chronic diarrhea for 5 months straight wouldnt have any damage? Moreover, we need to rule out Crohns. I wont be happy until we do. The child still wakes up screaming most nights and is truly uncomfortable. I cant tell you how many nights Billy and I have to walk her around the house just to sooth her. It's almost ironic because this is what we use to do with Hannah as an infant due to her being so sick. Layla, Layla was a great baby! Now at 16 months old we are having to use these soothing techniques that most parents wouldnt have to use past a year old. It's frustrating to say the least. So I will be saying many prayers tonight that this doctor will lead us towards the answers we need for my baby girl. I have faith in Boston. I truly do.



Please keep both Layla and Shannon in your prayers tonight! Thank you!




Here are the photo's I have been promising to post.


----------------------------------------------------------------------------------------

We took the girls to the American Girl Doll store a few weekends back. I dont think I have ever seen Hannah so excited. Heck, I dont think I have ever been more excited!

This was how Layla spent most of her time in Florida. For as sick as she was, she was still a little trooper!


My Hannah posing of course

and she was quite the little fish in the pool as well! Complete with earplugs she did exceptionally well!

Layla loved splashing in the ocean!

My Monkey.. monkeying around..

Flu bound

Forgive me for it has been forever since I have been well enough to post! Unfortunately, our Florida trip did not go completely as planned and Miss Layla ended up with the flu shortly after arriving in sunny Naples. From there is was spread to Mommy and we had a horrible flight home on Friday. Unfortunately, Papa ended up sick as a dog as well and we are all just finally getting back on our feet when you guessed it, Miss Hannah came down with it this morning!


We did have a few sunny days to enjoy Florida though and it was so wonderful to be in such warm weather. It was 80 degrees every day and Hannah thoroughly enjoyed being in her summer clothes. For the first time since September, the kid did not argue with me about what to put on! She was up and dressed and outside coloring before 8:00 am every morning! She also loved being able to swim in the pool and did not even put up a fight about having to wear ear plugs! Her surgery went well the prior week and although it took her some time to recover, as soon as the Florida air hit her she was back to being Hannah again.

Layla was a trooper even though she didnt feel well. We first thought that she had gotten the stomach bug as she began vomiting the first night we arrived. Yet as the days passed and she got more and more sick we realized upon two trips to the doctor when we got back, that it was the flu. The poor kid was flat out for 8 days straight and could barely stay awake for more than an hour at a time. She still is not acting herself and we are hoping to get more answers about that when we are up in Boston visiting the GI specialist on Tuesday. She is still waking several times a night screaming in pain. It really is heartbreaking and worrisome.

I promise to write more as soon as I can get caught up on laundry and the work that is quickly accumulating on my desk from being out of work for so long! I also have a few pictures to post of the girls in Florida!

Yahoo!

Yesterday was Layla's sweat test and it was negative! Yay! I wasnt really too worried about the test and I didnt think that it was going to be positive, but I was anxious to get the test done and out of the way and rule out Cystic Fibrosis. The highlight of my day was certainly when I got the call saying that it was negative. The little trooper did such a great job as the test was not so fun for her. We also had another GI appointment at Hasbro (We are going to Boston on Feb 24th still to see a GI specialist there) which I kept so she could help us with the formula situation as Blue Cross denied us for coverage. Fingers crossed she is going to be able to pull some strings and see what she can do on her end. She also gave us a prescription for Zantac to see if that helps with her waking up screaming so often at night. I am still very committed to ruling out Crohn's disease and I am hoping that the appointment with the Boston specialist will help us do this. If we rule that out, then I will be satisfied with the severe milk protein allergy. Her GI doctor also said that the allergy blood tests are not conclusive and that she most certainly has the milk protein allergy amongst other things. So that is where we stand with the health issues. Hannah gets her tubes in and adenoids out on Tuesday and then hopefully we can get her feeling better.

Other than that, everything is great. My parents are trekking it down to Florida in the RV and had made it as far as South Carolina yesterday, which I am grateful for. I was so worried about them driving and my Dad said that the weather has been horrible and it hasnt been a very fun drive. I am hoping that today it gets better for them as they should mostly be out of the bad weather. We plan to meet them out there on the 9th if all goes well with the kiddos.

On a sad note, my cousin Suzanne's husband Stephen has lost his brother and I ask that you keep him and his family in your prayers. Cam has suffered with cancer for a little over 2 years. He was diagnosed just after his wife found out that she was pregnant with their second child. he was given 6 months to live and he pulled through for 2 years. I can't imagine the heartache his family is going through, so please, send them some prayers.

Lastly, Happy Birthday to Judy! 29 right???

Here are some pictures from my gorgeous niece's baptism this past weekend. She is such a little doll and I am so honored to have been chosen to be her Godmother!

Quiet on the homefront

Things have been going quite smoothly the past week as far as the girls and their health. (Knock on wood!) I did end up taking Hannah to the doctor last week and she did indeed have an ear infection in her left ear. She got on the antibiotics and she is doing much better! Layla has her good days and bad. The formula has definitely put an end to her chronic diarrhea issues, if only we could get the insurance company to help pay for it! Unfortunately, without an official diagnosis, it doesnt look like we are going to win that battle! Apparently failure to thrive due to chronic diarrhea from a severe milk protein allergy is not a good enough diagnosis for them. We are still hanging on until our appointment in Boston on February 24th to rule out Crohn's etc... and her sweat test to rule out Cystic Fibrosis is next week. She is still waking up 2 to 3 times a night screaming and I cant help but wonder if it is from belly aches or just habit. I will feel much better when I am able to speak to the GI specialist in Boston and rule everything else out. I am keeping my fingers crossed that it is just a severe milk protein allergy and nothing more. I would feel terrible if this kid has been suffering from something more and it has take us all this time to figure it out. We'll cross that bridge if we get there.

On another note, I find it a little crazy that her blood test did not show the milk allergy. I am not too sure of the results of this blood work as it did say she was not allergic to eggs either. However, when we gave her eggs this past weekend.. within an hour, the poor thing had 3 episodes of diarrhea. Crazy? In speaking with a friend, she told me that her son has a severe allergy to rice. If he has rice, he goes into anabolic shock. However, this rice allergy never showed up on his allergy tests either. So I am thinking that these allergy tests arent that great of a tool in determining what Layla is or is not allergic to. So for now, we are just going with giving her what does not cause diarrhea.

We were able to get Layla's 15 month shots in yesterday as she finally had a few days without a fever. Thankfully she was good about it and didnt cry for very long. Hannah was quite hysterical as she gave her that look as if to say, "Hey stinks to be you!" Dr. Sowa checked Han's ear as well and all clear. So I am keeping my fingers crossed that all stays well for the beginning of February so we can get her tubes in and adenoids out with no problems.

All else is well on the home front with the exception of the fact that our 4 year old refrigerator died! So last night we headed to Home Depot to purchase a new one. (Insert pit in stomach here) We certainly did not need to add any more expense to our ever growing debt, but what can you do. We found a really nice one and of course, it had a sold sign on it. Thankfully, the person did not put any money down on it and was suppose to return at 5:00pm to purchase it and never did. By 7:00pm the salesman said it was ours. We were psyched as it had been mismarked and we ended up getting a pretty expensive refrigerator for a steal! Grampy came over to help us get it off the truck and of course, it didnt fit through the door.. nor could we get the old fridge out! Billy went postal and I couldnt help but to laugh hysterically! He started tearing the old one apart with a hammer and crow bar and eventually we got it out the door. It took Billy some time but eventually he figured out how to get the doors off the new fridge so it would fit through the door. My Billy, poor soul has zero patience and sometimes I cant help but laugh hysterically at him. An hour later the two of us are trying to shimmy the thing up a step and through the door. At one point he was shouting directions and he got agitated and said, "Look at me!" I nearly lost it as there was not one cubic inch of him that I could see as I tried to see past this huge refrigerator stuck in the doorway! All I could do was laugh! We finally got the fridge to the kitchen with only a few minor incidents (dropping it on Billy's foot, etc..) and.. you guessed it.. it doesnt fit! Thankfully I am married to the handy man and this afternoon he will be shaving counter tops and ripping out a cabinet in order to make it fit. After searching for our food that was strewn across the deck in the snow to keep cold, we stoked up the new appliance and finally sat down around midnight. All in a days work! Ha!

These are some pictures from our Friday Night Girls Night with our friend Shelby! I think they are pretty much self explanatory as these girls are true girly girls all set to the tunes of the Jonas Brothers!

Breath in breath out

Life has been a bit stressful lately for us. I am determined to remain positive and keep things in check, but it can be difficult on those days when you just cant keep your head above water. I will say that not getting enough sleep can certainly compound it all. The past week has left us up, down and all around with Miss Layla's diagnosis and undiagnosis. We received blood work back mid week which suggested she had Celiac's as the level was extremely high. We were waiting on the final test to determine the diagnosis when low and behold, it came back negative. This completely surprised us as well as the Pediatrician. In the meantime we had seen the Nutritionist who confirmed that we must keep Layla on the $50 a can formula as it has the most calories (her weight has dropped a bit) and it seems to be the only thing stopping the diarrhea. We are trying to get it covered by medical insurance but we haven't any luck yet.

After speaking with the Pediatrician, she wanted me to contact the Pedi Gi and ask what we could do to get testing for Crohn's done. This runs in the family and it would certainly explain the fevers. Also, she did not feel comfortable with the first blood test being so high. I contacted the Pedi Gi and she told me that she wanted to just wait and do nothing else. Give her body some time to get back on a routine with this new formula and she would check in with me in a few months. I was MAD! RED MAD! (LOL) After venting to my sister, she told me to call the Pediatrician back. (Mind you that this all went down at 4:00PM on Friday) When I did, she was not happy. She said, "Oh no, I dont feel comfortable with that, do you?" I told her no and she immediately gave me a number for a Boston Pediatric Gastro. I called and the earliest appointment I could get was for February 24th. I'll take it. We are on the list for an earlier appointment if a cancellation should arise. All of this rig a ma roo leaves me completely exhausted sometimes. Why does it have to take so long to figure out what is wrong? I just want to figure it out and do what we can to make her feel better! It's so very frustrating!

In the meantime, Hannah monkey was not herself over the weekend. She was quite defiant. Low and behold, she was up all night crying and unable to sleep or get comfortable. As I put her in the car seat this morning I went back in to grab my little ear checker guy (I finally broke down and bought this nifty thing) and of course the left ear read RED and the child should be seen. So we are running her by the Pediatrician's office after school. It is so hard to figure this out with her as she never complains of pain, just acts out in other ways. Defiance, sleeplessness, etc.. Our appointment to get the tubes put back in and adenoids out can not come soon enough!

So that is where we stand today, Monday! Who knows what tomorrow will bring, although I am still totally committed to getting these kiddos on track and feeling better. This is completely the payback I get for putting my parents though hell as a child with my health! LOL.. The asthma, the weird medication reactions, the broken limbs and stitches.. man payback is a (you know what!) I now understand Mom and Dad.. I now understand what I put you through!

I am posting a few pictures of Layla as she was being all too quiet the other afternoon and when I went to find her.. this is what I found. We also let her have her first real treat yesterday afternoon.. an Oreo cookie! She loved every bite.. as you can see!

The verdict is in..on Hannah at least

HOW ON EARTH DO I GET MY KIDS HEALTHY? This is my New Year's resolution! We had Layla's 15 month appointment at the Pediatrician today. She has had a high fever for several days and she had the same last weekend as well. She currently seems to have a virus as her throat was red, but the doctor also wants to be proactive about the reoccurring fevers so we will do some more blood work. Her allergy blood work has not come back yet (even though it was done a week ago) and we will know more when we see the results of that as well. (I have 2 phone calls into their office.) It really begins to get frustrating when you have to chase all these doctors down just to get results. I have been all over the state for appointments, blood draws, etc.. and I am at wits end. I wish we could just figure this all out and get on the road with a treatment plan! Dr. Sowa also feels that Layla's fevers could just be from her constantly picking things up because her immune system is not so good from not getting the proper nutrition. We finally seem to have found the source of the chronic diarrhea (Milk Protein Allergy) so at least I feel like we are getting somewhere on that end. We have an appointment with the nutritionist on Friday to then figure out what we CAN feed her so that she is getting the proper nutrients and therefore she can get her immune system working properly. I am hoping her allergy blood work will be back by then so that we can add that all into the equation. Thankfully, she did not want to give her the 15 month shots today as she felt it was too much to put on her, especially with the fever so we are going back for those. We have a follow-up appointment with the Pedi GI on the 28th and a sweat test on that day as well. I am a little apprehensive about the sweat test. I dont think there will be an issue as she isnt technically losing weight (although she is only in the 5th percentile for weight) and I dont notice the signs that go along with Cystic Fibrosis.. but it is still scary for me. I just want it over and done with with so we can rule it out and move on. So that's where we stand with Miss Layla Cakes.

As for the Hannah Banana...She had her follow-up hearing test yesterday which showed mild to moderate hearing loss in her left ear (no shocker there). So we are now putting tubes BACK in and taking OUT adenoids. I am relieved as I know the hemangioma wrapped around her ear tube is the cause of this. I know that we will be dealing with more of a long term solution for this because every ounce of me believes that this will be an ongoing concern in her left ear. However, we are doing what we need to do to get the hearing back where it needs to be for now and we will wait and see if Hannah can grow out of this on her own. Even though I am not optimistic about her growing out of it, I know we are taking the appropriate steps to do what we need to do now for the current situation. He did say the hearing was repairable, so fingers crossed this will be true. I am also happy about putting the tubes back in so that Hannah can just get some relief. Even though she doesnt feel the pain of the constant ear infections and fluid build-up, it does take its toll on her. I can always tell when something is going on because she does not sleep well, she looks pale and her eyes look sunken and she just gets plain unruly. So I am truly looking forward to her appointment on the 3rd of February.

In the meantime, I received the "Deceptively Delicious" cookbook from my sister in law for Christmas and I must say, it is fantastic! I have been puree-ing all of these wonderful vegetables and sneaking them into the girl's food (Billy's as well) and they cant even tell. Layla loves the chicken nuggies coated with sweet potatoes and we had taco's last night that were delicious! Hannah had no idea it contained butternut squash and she ate every morsel. It makes me feel good that they are getting at least some good nutrition in their diets.

Lastly, I have to post about how sick I am over hearing the news about Jett Travolta. Many of you who know me know that I have always been very fond of John Travolta and his work and I am just so saddened to hear about this tragedy. I wish the media would just leave this family alone and let them grieve without trying to spin a story about them. There are very few "normal" good natured families in the Hollywood scene and I always felt that John and Kelley were one of them. I can not possible imagine what they are going through and to have to go through it under the microscope of the media is just so disheartening. I just can't even begin to imagine their pain and I truly wish them comfort in this time of grief.

Hannah's Photo Shoot

Happy New Year!



I was able to use our New Year's Day off doing something productive this year.. and that was having girl time with my Hannah. Layla is still not herself and when she went down for a nap with Daddy, Hannah and I snuck up into her room, put on the Jonas Brother's CD and went to town just being GIRLY! I loved every minute of it! She truly makes me relive my childhood and I am so grateful to have girls to give me my youth back, even if it is only for an hour or two! I will post a few of my favorite pics here and you can find the rest on my other blog at http://www.mynotsosecretpassion.blogspot.com/. Hannah is so very easy to take great photographs of as she is at that age where she loves to be silly and most often dramatic... she must get that from her father... eh hem.. Moreover, and I know I am probably prejudice in this area, but I think my little girl is just plain beautiful!



Here are 5 of my favorites!