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.


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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!