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!