Update on Layla Grayce

Well, I was hoping for some answers by now, but the appointment yesterday did not go as well as I had expected it too. (Insert Murphy's Law here) When the Pediatrician told me that she wanted Layla to see a pediatric allergist she gave me two names. One was at Hasboro and the other happened to be the same doctor I see for my own allergies and asthma. I chose the one I knew because even though I didnt think he had much bedside manner, he is quite intelligent and my asthma has been the best as it ever has been. So I scrambled there after work yesterday only to wait with both children for 55 minutes before we even got in to see him. Once inside, we waited another 20 minutes. This Mommy was not a happy camper. When he did come in, he seemed hurried and wasnt really listening too much to what I had to say and seemed preoccupied with typing her history in his computer rather than really listening. I asked him to check her ears as she had been tugging on them. He looked at me perplexed and then checked them only to say, "Well they seem alright and she didnt cry when I checked them, but I dont do much of this so follow up with your pediatrician if she has any more symptoms." WHAT? I am sorry..WHAT? You are a pedi allergy specialist and you are unsure of how to check a child's ears? Have I gone mad?

My next frustration came when I asked about her skin test and he told me that she wouldnt be skin tested, that he would do a blood draw. I explained to him that when I had called to get the specifics about the appointment, they told me she would be skin tested. He said no, a simple blood draw would do. (At this point I was pretty aggravated) I tried to ask about the blood draw and what it would tell us and he said something about Celiac's disease (Which I knew because the pedi GI had faxed those orders to him earlier in the day), he said a few more things which I didnt understand and then he disappeared. When he came back, I tried to ask him about our formula issues and if he knew of a solution or a way to prescribe it so that our insurance would cover it. His response was that he didnt know much about formula that I would have to ask the pediatrician and .. I quote.."Why dont you put her on soy?" That was the straw that broke the camels back. He obviously had not listened to me at all, or read her records and history and HAD NO CLUE WHAT HE WAS DOING! I explained to him that she did not have a MILK ALLERGY that she was allergic to the PROTEIN in MILK and that that protein also existed in SOY, LACTAID and the million other formulas we had tried. (Can you sense my frustration here?) Obviously we had exhausted all the other options before putting her on the $50 a can formula which finally seems to be doing the trick. At this point, I wrote him off, grabbed the girls and headed to the lab to get the blood work done, which had I known, could have been added to the draw we had last week and saved the child another traumatic experience.

So as you can see, I am ticked. Completely ticked. This doctor may be intelligent with adults and allergies, but hasn't a clue as to how to treat a child with severe food allergies. At this point I am ready to call Boston. I have an appointment with her Pediatrician early next week and I WILL be discussing this option as I have had enough. I know that her condition is nothing serious, but it is a condition and I need to get to the bottom of it so that I know what to feed the poor kid without giving her severe bouts of diarrhea! At this point, she is not getting the proper nutrients and her immune system stinks because of it. At least in Boston, I drive up, see the 3 different doctors on the same day, the next day they discuss and by the 3rd day we have a diagnosis and I move forward. This has been going on for months and I am nowhere near closer to figuring it all out! Never mind, dont you think I should have an epi pen? (This thought just occurred to me!) The child has a peanut allergy.. shouldn't I be equipped with an epi pen? I am flat out aggravated to say the least.

That being said, I am headed home after work to enjoy this New Year's Eve with my husband and children. We decided not to trek it to New Hampshire as it is snowing and to be honest, all four of us are exhausted! I am looking forward to a night of cozies with my family and I am extremely looking forward to a day off tomorrow! Hopefully I will have some new pictures to post of the girls in the snow as my brother sold me his camera. I was having way more fun with it than he was! LOL He sold it to me for a great price and I am very excited to get learning and get shooting! Thank you Robbie Dobbs!

Happy New Year! May all your dreams come true in 2009!

xoxoxo

The after Christmas let down

Am I alone in still feeling that same feeling I use to feel as a child when Christmas was over? (Sigh) I think I have gone into a mini depression of sorts. I know I shouldn't feel this way, especially as an adult, but I still get that pit in my stomach. Christmas is over. All the hustle and bustle of the season has ended and I feel.. well.. a little empty.

As soon as November hits I get into the spirit of the season and I have to say this year, as all the previous, I had the best of intentions to get organized, have my shopping done and have it all wrapped by December 1st so that I could just sit back and relax and enjoy seasonable events with the girls. NOT SO MUCH! Yes, I was still shopping on December 23rd and now here I sit with the holiday come and gone and I feel so guilty for not taking the time to enjoy it more. I should have taken a breath, stopped and exhaled. I intended to, but I didnt.

Last night we took down the last of the decorations and the tree. This too, I dread. I remember my parents doing it shortly after Christmas and by New Years, everything was down. I never understood why they couldnt keep them up just a bit longer for us kids to enjoy. Now I get it. For me anyway, looking at them just reminded me of the holiday that was gone. It was more depressing for me to look at them then to just take them down, clean up and forge ahead. I did feel better this morning waking up to a clean, uncluttered house and I know that as the days go on I will get back into the swing of things and look forward to putting out some Valentine decorations.

The girls most certainly did enjoy Christmas Day as did I. This Christmas we tried to keep everything in check and only did one house per day which definitely made things a bit easier on us, and more importantly, the girls. We were able to sit, relax and not stress the next place we would have had to go to. Hannah loved her Christmas treats that Santa left and Layla got a big kick out of it all as well. I dont think she has put her guitar down since Christmas morning! Layla is also enjoying her little battery operated car and zooming all over the house. It is quite hysterical to watch. Family and friends were more than generous and at one point, I had a mini clothing store on my dining room table! WOW! I need not buy them a single thing til the Spring! THANK YOU!

It seems as though I have come down with yet another cold. Did I ever even get over the last one? I am certainly not feeling well and an extremely restless night of sleep for the girls and I is definitely adding to my yuckiness. This cold has brought along some aches and pains and my back is so sore and my shoulders are as well. Layla also hasnt been right and I am suspecting an ear infection. She has had an on and off fever for the past several days and is not sleeping well at all. We have her appointment at the allergist today and I am going to ask them to check her ears. Moreover, I am quite anxious to get to the bottom of all of her allergies.

The GI appointment confirmed our suspicions as to her being allergic to the protein in milk as this is different than just a milk allergy. Being that she is allergic to the protein in milk, she is not able to ingest soy milk, lactaid or the like. As well as an array of foods that I had no idea this protein existed in! (eg: lunch meat) So much for all that ham I had been feeding her! She was placed on a special formula that is currently costing us $50 per can and only lasts 3 days. It's quite a hefty price and we are hoping to find a way to order it in bulk so that it is not so expensive. Otherwise, I may be finding myself getting another job in order to afford it. I am totally beside myself that health coverage wont cover it. She needs it in order to thrive! How do you not consider that a medication? Aye, that's beside the point I guess since it is completely doing the job and our horrific bouts of diarrhea have ceased. She actually had a few normal BM's! Hopefully this allergist appointment will get to the very bottom of all the rest of her food allergies and then in working with the nutritionist, we can devise a menu of what she CAN eat since it seems like hardly anything these days. I am not looking forward to keeping her calm during the scratch test, although I know this is the only thing that is going to help us get to the bottom of everything so I will do the best I can.

I hope that everyone enjoys a very Happy and Healthy New Year! I have vowed to stop and smell the roses a bit more as this thing called life seems to be passing me by way too quickly. I also need to get my butt moving and get motivated to lose some pounds this new year! I am thinking of taking up spin.. any takers? LOL

Lots of Love and HAPPY NEW YEAR!

Merry Christmas

I am posting now as I know the next several days will find me a bit too busy to be able to find the solace of my computer. So first and foremost, I am wishing all of you a very Merry Christmas and a Happy New Year! May it be filled with the Christmas spirit, laughter, good fortune and good health. May the new year bring you much joy and many new found miracles! Snuggle tight with your little ones and loved ones and enjoy the reason for the season as this is the time that dreams do come true!

I cant believe how quickly this holiday has snuck up on us! I finally finished my shopping this morning as I had thrown my poor dollies in the car at 7:30 and headed out to run our errands prior to work. Thankfully we got it all done and I am relieved! Billy is running to the market for me (these are the times when I truly appreciate him!). I cant imagine if I had to fit that in, especially with both girls today!

I was able to finish printing out the girl's holiday portrait and I have to say, it came out adorable for not going to a studio. I am so thankful to my brother for letting me borrow his camera. I got some terrific shots of the girls and as soon as he get's a chance, my brother promised to download them on my computer. My brother will be happy to see that he is getting an extra frame with an adorable picture of his God daughter in it as well! We wrapped them all last night and I finished wrapping the girls gifts in between Layla's awakenings.

Santa came for an early visit in the evening. I have to say, our Santa has come every year since Hannah was born. That year, being particularly memorable as it was when we knew that baby Hannah was going to be okay health wise. I think I cried as he gave me a beautiful angel that Christmas. I knew the meaning behind the gift and I truly appreciated the gesture. Each and every year he comes bearing the most adorable gifts for my girl and now my girls. I am so grateful to him as he is my best friend's father and he has a heart of gold. He takes his Santa job very seriously and to be honest, I almost think that someday he would actually like to BE Santa! He would make the best one! (wink)

We are heading to Layla's gastro appointment at 2:30. I am a little leery as I am not such a fan of our local children's hospital, but I am also trying to stay positive in thinking that this appointment may put us a step in the right direction. She is still having terrible bouts of diarrhea but thankfully, the diaper rash has cleared up (Thank you Kerri Frezza!) and I was able to get two samples off to the lab this morning.. NOT FUN! In the least bit! I am at wits end trying to figure out the cause and how to stop it and I am hoping that between this appointment and the allergist appointment on the 30th, we will get to the bottom of it and my poor little petunia can finally get some relief! I know the fact that all of her teeth decided to come in at once isnt helping matters in the least either. She had two teeth which she cut at 10 months and then nothing until now! All of a sudden she has 6 more coming in at once! My toothless child is no longer! :)

I am very much looking forward to Christmas morning. Moreover to see Hannah and Layla's reactions. There is just nothing like the excitement. It is the next best thing since I was a child running down the stairs to see what Santa had left! My parents always made Christmas so special in our house that I am so excited to transcend the tradition on to my own family. I know Hannah is going to be thrilled with her presents and I am very much looking forward to seeing Layla react to it all as well. Again, and I know I say this often, but I am truly blessed. Truly.

Lastly, I just have to post a great big gracious thank you to the big man above. He kept my sister and baby niece safe yesterday when a tree fell through their house and crashed into my niece's brand new nursery. I am still in disbelief but so relieved that no one was harmed. My sister had taken Reanna from her crib only a half hour prior to the incident and I am just so thankful that the good Lord watched over them. I know that it was one thing after another for them yesterday and everything seemed to have gone inevitably wrong, but the one fact that remains is that everyone is safe and sound. I know the disappointment and horror they must be feeling about having so many things ruined however, they can be replaced. My sister and niece can't and I am ever so grateful that nothing harmed them. Thank you GOD!

Well I am off to finish the work on my desk and then head out to our appointment. I will sign off by saying a great big thank you to my family and friends for all that you do to grace my life and the lives of my children. I am and forever will be grateful for the outpouring of love you show us throughout the year.

Merry Christmas!

Our Hemangioma Journey

I ask that anyone reading this blog today, keep the Armstrong family in their prayers as they are enduring the 4th anniversary without their son, brother, uncle, husband and friend. Rob was an amazing individual and I was honored to have known him as my brother's best friend. He surely died too young and suffered too long. May peace be with his family at this time.
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This post is going to be different from the rest as I am using it as a tool to educate and help other families who have dealt and are dealing with a certain birthmark called a Hemangioma. It's funny, the word literally rolls off my tongue and yet so many others have a tough time pronouncing it. Maybe it is because I have become immune to the word and it doesn't seem so scary to me anymore. For those of you who who have just begun your journey with a hemangioma or hemangiomas, and it is a journey, I promise that you too, will someday learn to say the word with second nature. I hope this post does truly help other families who are and have been touched by vascular birthmarks. Writing about our journey is always a bit emotional on my end, so please bare with me. Although it was 4 years ago, every detail is still so fresh and vivid in my memory. I will also add that without the love and support of both Billy's family and mine, we would have never made it through. They were our rock, our constant, their support never flailing even though they too, were hurting.

My water broke at 34 weeks when I was pregnant for Hannah. I sprang up in bed at 5:00 AM wondering what on earth just happened. Several trips to the bathroom later, I realized what was going on. After waking my husband from his nightly sleep induced coma, we called the doctor and headed to the hospital. Quite to my surprise, the doctors decided to keep me pregnant for another week and I was admitted on strict bed rest. Throughout the week I was a bundle of nerves as the nurses tried to prepare me for what was to come. Although giving Hannah another week for her lungs to develop, she would probably still need some help breathing and therefore a trip to the NICU for a few days was to be expected. My strong choice to have a natural child birth teetered as they felt as though my baby girl wasn't facing the right way and therefore their intentions were for a c-section. This being my first baby, I was terrified. However, my Hannah felt my fears and quickly repositioned herself the night before my scheduled induction and I was able to go along with my wishes and avoid the c-section.

Finally the morning of July 12th arrived and I went down to the Labor and Delivery room. Pitocin was started and contractions began immediately. About an hour later I decided to get the epi and it was quite an ordeal. It actually was more painful than childbirth as they never did put it in right. About a half hour later I was feeling extreme pressure and I knew something wasn't right. My doctor had forewarned me that she probably wouldn't be delivering as it would be quite some time before baby was ready. I proved her wrong. After sending my sister for a nurse, she checked me and Hannah had already begun her decent. 7 pushes later, I met the most beautiful miracle I had ever laid eyes on. I was in awe of all 5lbs 2 ounces of her. I remember thinking on the last push, "Just let me hear her cry, just let me hear her cry." No sooner did she make her appearance.. I heard the most beautiful sound ever, her cry.

The doctors took her immediately and my husband went over to the other side of the room with her. Unfortunately there were some complications with the after birth as my water had been broken for a week. Thankfully, with a lot of hard work from my doctor and me pleading with her to not do a c-section now to keep trying, she succeeded. I kept looking over at Hannah and staring at the doctor's faces to read their reactions. Finally, I saw the pediatrician walk out of the room. I looked at my doctor and said, "Is he going to bring her to the NICU now?" Her reply was, "Honey, that doctor just left without your baby. This means that she is healthy enough to be put in your arms. No NICU for her!" I cried.

A moment later Hannah was placed in my arms for the first time. She was breathtakingly beautiful. This moment was such a high for me that the only thing that could ever compare to it would be when my Layla was placed in my arms for the first time. Every inch of Hannah was perfect! The next few weeks were a blur as we were able to come home on time and Hannah stayed healthy. I enjoyed those first few weeks tremendously.

It wasn't until Hannah hit the 3 week mark that I began to notice these faded pink marks on her scalp. There were maybe 3 or 4 of them at the time. No bigger than a dime. I thought nothing of it as they were very faint. My pediatrician at the time eased my fears and referred to them as "Stork Bites" or "Strawberries". Yet, the days went on and they began to get bigger and more fiercely red. At first they were flat on her head, just as a skin discoloration. Within 2 weeks they began to raise off of her head. I desperately began to worry and my Pediatrician again, told me not to worry, that in a few months they would go away and that they were a harmless birthmark. My gut knew better, but I continued on. During the next month I began to do things that I now look back upon and loathe. We would put hats and hoods on Hannah so that people wouldn't stare. I would always try and cover her birthmarks so people wouldn't notice. I remember often being out with my best friend whose daughter was a mere 4 months older. People would constantly tell her how beautiful her baby was and then look at Hannah and literally gasp. It was heartbreaking and I truly wish I had found other ways of dealing with these parts of Hannah. I remember thinking what a poor role model I was covering up these part of Han. UGH.. I really dont even like to think about it.

At about 3 months old was when the final straw began to break. I was dressing Hannah to put her in the car so I could head to work with her. I put a hat on her head, grabbed my keys and went to pick up the car seat to head to the car when I noticed a red spot on her hat. Confused, I took the hat off to investigate. At the same moment, Hannah screamed in agony and blood started to literally gush out of her head from one of her Hemangiomas. (The Largest) I am not exaggerating in the least bit. It was pulsing out of her head. I fumbled for the closest thing around which was a receiving blanket and put it on the wound. She screamed louder. I fumbled in my coat pocket for my phone and called Billy immediately in hysterics. He had me call the ambulance and somehow made it to the house before them. It is hard to write about this day without tearing up as I can still hear her screams. I dont think I will ever forget them. En route to the hospital the EMT's tried to wrap their minds around Hannah's condition. They had no idea what a Hemangioma was. By the time we reached the hospital I was frantic. We were put in a waiting room and we waited 45 minutes before a doctor even came in. As soon as I would pull the blanket off her head, it would start all over again. The doctors looked puzzled and kept saying that we were going to have to wait it out. That these things would eventually go away. I was terrified and angry. 7 hours later we left the hospital only for the same thing to happen all over again before we reached the parking lot. Billy called the ER and we were told to apply pressure. That was it. I was disgusted.

As soon as I got home, I frantically began to search the Internet. It was at this time the term, "Hemangioma" was presented to me. I found a support group on MSN called "Vascular Birthmarks" I joined. As soon as I had finished posting our story, the emails came pouring in. Advice, comfort and direction is what I found on this site. It became my savior. It took another month for things to hit rock bottom. Sadly, Hannah had many many more episodes of bleeding. Many more trips to the ER and many more dumbfounded, arrogant doctors who hadn't a clue how to deal with her case. My pediatrician was HORRIBLE with a capital "H" and she would again and again ramble on about how these will go away and how it was no big deal. I would bring up my concerns on how all Hannah did was cry and when I went to change her diaper I would lay her down and she would give an immediate "stunned" look and then scream. Her reply to my concern was, "All babies cry." I found a pediatric dermatologist to my pediatrician's dismay. She tried to help me best as she could. She gave me some creams to try and unfortunately it only made matters worse and sent us to the ER with the worst bleed yet.

Night after night Billy and I would sit and stare at her in the swing and wonder if we would make it through the night without her bleeding. Night after night I sat in a chair and slept with her in half hour intervals. One Sunday morning the pediatric dermatologist called me and asked me if I had switched pediatricians. I told her it was my plan to do the very next day. She told me that it would be wise to do so. (I found out later that my old pediatrician had called her and said that she didn't understand why I had sought her help as these birthmarks were of no worry and would go away.. she saw it all the time.) The next morning I had her records transferred. At noon time, her new Pediatrician called me and asked me to go to a blood lab and get blood work done on Hannah, that she would see me at 4:00PM.

I did as I was told and went to see the new Pediatrician that afternoon. She called us right into a room and sat down very close to us. She looked right into my eyes and said, "Your baby is very sick. As soon as you leave here, you will be driving straight to the hospital where she will be admitted." A part of me stopped breathing, the other part was gasping in relief of finally finding help. It turns out that Hannah's hemoglobin levels were extremely low from losing so much blood during her episodes. (NO ONE EVER THOUGHT TO CHECK THIS???) Moreover she had a bunch of other issues relating to the Hemangiomas and Dr. Sowa also wanted further testing done immediately.

We drove to the hospital without passing go. It took FOREVER but finally at 1:00AM Hannah was admitted. The next morning Hannah received a blood transfusion. (Oh how I remember all of my family members running out to give blood so that she could get theirs. The thought just brings fresh tears to my eyes.) Hannah's coloring slowly came back. I remember looking at her tiny little body in the hospital crib with all wires hanging out her thinking.. "But she is looking better.. she is looking better. We've got help now. Hannah underwent many tests that day and the next. Dr. Sowa told us she was going to have a MRI done of her brain and her abdomen. I begged her to do the brain scan first and she agreed. I met with a few arrogant doctors and put them in their place. They were amused by my knowledge. I had done so much research that I think I knew more than them. At one point one of the nurses came up to me after an extremely arrogant surgeon had walked out of the room and said, "Good for you. You put him in his place. I dont often see him speechless."

The next day Hannah was rolled down to have a MRI. I was able to sit in with her. The noise was horrible. Thankfully, she was sedated. The day went on and at 7pm I remember being so exhausted. I hadn't slept in weeks. Our parents had just left and Billy and I were talking, feeling relieved that we had finally found help. An hour went by when the door opened and it was doctor Sowa. I knew right away something was wrong. My heart dropped. It was 8pm and the Pediatrician just walked into the room? She had us sit together and she faced us and said, "This is hard, Hannah has many, many, many more of these Hemangiomas on her brain." In an instant, my life changed. I cried. Billy cried. Dr. Sowa cried.

After trying to compose myself, I finally found the words to say, "I want her in Boston." Dr. Sowa winked at me and said, I have already arranged for a team to come down and transport her via ambulance tomorrow afternoon. The next day we transported her. Of course not without incident. The ambulance broke down and it took us 3 hours to get to Boston Childrens Hospital. Hannah's iv kept popping out and we had to keep pulling over so the EMT's could find a good vein. We arrived at 9:00 PM and Hannah was admitted to the NICU. I think she was the biggest baby in there weighing in the 6-7lb range at the time. I was told to wait outside the door until they got her situated. I went into the waiting room only to find both of our families waiting there in support. I remember breaking down in exhaustion.

A few moments later I met Hannah's nurse, Gwen. She was by far the sweetest nurse I had come into contact with throughout the entire ordeal. She too, had a daughter the same age. We bonded immediately and I trusted her. I sat in a wooden rocking chair for hours that night just trying to make sense of everything. The baby next to Hannah was born at 1lb and her name was "Yoshi". I felt sad for her because there was no family there to support her. The next morning I met Dr. Fishman. I was so glad to see his face as I had read all about him during my research. I immediately let him know I knew of his study and that our case didnt fit the mold. He looked impressed and I was impressed with myself at the time. I told him that I knew she was in pain when they bled as I had seen that he too, felt as though this condition was very painful, more so with bleeds. However he said to me, "The sheer pressure built up in her head from the blockages was more painful than anything." I cringed. Then I cried.

Days went by and Hannah was put on a regiment of medicines. Steroids to stop the growing hemangiomas, iron, zantac for her stomach issues with taking the prednisone and a blood thinner injection to be given twice a day to stop the blood clot on her brain. These hemangiomas were making a mess of her brain, but slowly, Hannah began to heal. Slowly, my baby began to regain her strength and her life. I met with the neuro team headed up by a Dr. Edward Smith. He was a doll. I sat face to face and asked him what he would do if this were his child and he gave me his advice. The plan was set in motion. It was at this time I remember having a conversation with him and he told me that Hannah was in mere weeks of having either a stroke, seizure and inevitably death. Had this gone on any longer, there was a very good chance that Han wouldnt be here today dancing around in our lives.

We spent a few weeks up in Boston and I slept by her crib side every night. I didnt care. I couldnt leave her and I was so relieved. The level of care at BCH is second to none. I felt that as soon as Hannah was transported there. No doctor ever had a dumbfounded look on their face. They knew what they were doing, they consulted, they made a plan and they put their plan in effect. They acted miraculously. I am undeniably grateful to them, Dr. Sowa and Dr. Pedvis the pediatric derm.

The months passed and Hannah continued to heal. I administered her meds daily and gave her the injections and I got used to it all. The bruises at the injection sights, the horrible side affects of the prednisone... all of it. I didnt care. My baby was alive. She was going to be okay. We spent many days back up at Boston with follow-up MRI's and meeting with Dr. Smith and Dr. Mulikan. I could do that drive in my sleep. Again.. I didnt care. The level of care was extraordinary and I would have driven a million hours if need be.

On Hannah's 1st birthday, I administered her last dose of steroids and her last blood thinner injection. It was the best birthday present she will probably ever receive. This milestone for me was huge because I knew then our journey was beginning it's decent to an end. (I promised you it was a journey.)

Today, Hannah is a beautiful, courageous, endearing, bold, energetic, intelligent, strong willed 4 year old. There are no lingering affects on her brain of what she went through. The Lord gave us a miracle at it's best. It is still unfathomable in my mind. (I try to remember this when she is being unbearably fresh!) She is healthy, with the one exception of her left ear tube which is something we will be dealing with in the near future and finding a way for the ear to drain properly. I am blessed. Truly blessed. She dances around my life bringing me so much laughter and joy. She is a wonderful big sister to Layla-Grayce and she is just an absolute joy. She is a tough kid and I will always credit that to the pain she endured as an infant. She brings joy to everyone she meets and most often laughter as well. She has all of her grandparents wrapped around her little finger and I look forward to the many more days that God has given me with her. I pray that she lives a long and continuously healthy life.

If you have just begun your journey, may you find peace and courage to deal with all the aspects of it. I pray that you too, find an end to your journey. Please feel free to contact me with any questions.

I will warn you that some of these pics are graphic.

Hannah, the beginning. These are all when she was between 1 week and 2 months old. Her H's actually got much bigger but I dont have any pictures from then.

After Treatment

My Monkey today.. safe, happy and healthy. If you look closely at her scalp, you can still see the red, flat hemangiomas. In a way I am glad that they still exist underneath what little hair she does have (lol) because I feel as though it will always be my reminder of how blessed we are to have her in our lives. I love you Hannah!

Holidays with the Murphys

WOW~! These past 2 weeks have flown by! I have not had one single second til now to do some updating on my girls!

Thanksgiving was wonderful as we spent the day with my family. It was the first holiday that we have stayed put at one house since I gave birth to Hannah 4 1/2 years ago. It was a nice change of pace. The girls enjoyed their day and they looked adorable in their best clothes courtesy of Papa. My poor father started a tradition about 28 years ago to take my sister and I shopping for our Thanksgiving "Outfit" on Thanksgiving eve. This was mostly to get us out of my mother's hair so she could finish her cooking in peace. 28 years later with three new baby girl additions to the crew, we nearly break the bank! Papa handled it all in stride and all three little miracles looked darling in their new dresses.

On Friday I got to catch up with my High School girlfriends. It was wonderful to see Valerie with her baby bump! She looked adorable and I couldn't be more happy for her and Jack. They are expecting in January. It was also great to share my friend Tracey's baby news. She has tried for so long and has been through so much that I am just thrilled to know that she is 18 weeks pregnant at this point and doing well. She certainly had that Motherly glow. The girls and I had a great time catching up and laughing, as we always do.

Saturday we headed out to Long Island to visit Billy's family who spent the holiday on the island. We had a wonderful weekend there with Jill and Dave hosting. We headed to Dave's parent's Country Club and had a fantastic dinner Saturday evening in celebration of my mother in law's birthday. Mr. Hungerford was so adorable making sure the girls were happy that he bought them all treats to play with at dinner and the private room was decorated in one big Minnie Mouse balloon and another big Mickey Mouse balloon. They are always so very thoughtful.

Unfortunately last week was a tough one for Miss Layla. She ended up with 104.5 fever for 4 days. I ended up in the ER with her Wednesday night for 5 hours. We got home at 5AM with a diagnosis of Roseola. Which I suspected but knew there were other issues as well and they weren't very helpful with those. Thankfully however, Dr. Maddress was a godsend and with some investigating and trying of different things, it seems as though Miss Layla is allergic to the protein in milk products. (This protein/sugar is also in Soy milk and lactaid milk) She had been so extremely fussy and it has just gotten progressively worse. She would wake often during the night and would hardly take naps. She just wasn't happy. We started her on Alementum formula and BINGO.. my happy baby returned. It was so bitter sweet to have her back so happy and full of laughter... but it also made me realize how long she has probably been suffering for and I felt awful. In speaking with the doctor, it would have been hard to detect before 12 months because of me nursing her.. but still. In thinking back there was a time when she would sleep in her crib and at about 5 months it all changed. Who knows.. she could have been suffering from cramps and was uncomfortable then and this is why she would cry and scream in her crib. Moreover, all those times I took her to the doctor between 9 months and a year old when I could swear she had an ear infection yet they would say she was fine.. all this time it was her belly that was causing her discomfort and sleeplessness! I know I cant look back, only forward and we have to move on. I am so happy to have her back though and I can tell you I have thoroughly enjoyed these past 3 days with her as she is quite the funny bug as well. She has gone back to taking her 2 hour naps and actually slept through the entire night last night! Yipeee! She is babbling away at lightening speed.. making no sense of course, but still just the same. We have appointments on the 30th with a GI specialist as well as an allergist to help get to the bottom of things and get a complete diagnosis so certainly we are headed in the right direction with her.

I would be remiss if I didn't mention the spectacular time we had on the Polar Express Sunday evening. We drove up to New Hampshire on Saturday and spent some time with Grammy and Grampy as well as Auntie Leanne, Uncle Dan, Arielle and Addison. This was our second trip on the Polar Express and I swear it was just as much fun as the first. My parents drove up Sunday morning and I was so happy that they were able to experience the magic through Hannah's eyes as well. Watching her expressions during the train ride seriously make my lifetime. She is filled with wonderment and excitement and it is just such an amazing time to share with her. As we were walking out of Santa's igloo at the North Pole, it began to snow, right on cue! It was FANTASTIC! It made for a little bit of a hectic ride home, but it was truly worth it!

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Lastly, I am sad to say that this world lost another great angel. On December 1st, Gramma Rose passed away. Although she lived to be 91, it still doesn't make it any easier to know that she is gone. She was always such a sweet lady and always greeted me with a smile. I love to hear the stories that Billy, Jill and Leanne have to tell about their childhood with her. I can only imagine how difficult it is for my father in law to have lost her and especially so close to Christmas. However, it is comforting to picture her up there with my dearest Mama and Memere. I am sure they are thoroughly enjoying each other's company, playing cards, making cookies and cooking up a storm! You will be missed Gramma Rose.

Celebrating Life on a Cold November Weekend

Well the weekend was certainly filled with much excitement! Friday evening I had the girl's doctors appointments. It is always so stressful trying to figure everything out there! Hannah's ears were still a bit off the doctor said and she wasn't sure if it was the beginning of something, or the end of her previous ear infection. She didn't want to keep putting her on antibiotics so we are playing the wait and see game with her. It is so tough because of everything she went through, she has such a high tolerance of pain. We never know when she has an ear infection because she never complains! (Sigh) Layla's ears looked great and although she had a few more teeth cut through, the Dr. felt that this wasn't the cause of her discomfort. When I brought up the whole stomach/diarreha issues she said "Ah Ha". (Sometimes I really stink at Motherhood because whenever I think something is wrong, it isn't. When I am lackadaisical about symptoms, it's a cause to be concerned.) The doctor put her back on formula which I was relieved about. It seems that when we took her off, was when all the problems began. So hopefully, this will help her start to feel better!

For the first time in a very long time, I ventured out with some girlfriends on Saturday evening. The reason for the gathering was to celebrate life. My dear friend Shannon's. Shannon has finally reached her final chemo treatment and with her head newly shaven for the very last time, we all gathered together to celebrate this major milestone. What a remarkable person Shannon is and with Sandy by her side, the evening was truly a fantastic one!

We gathered at our forever favorite Tony's pizza to begin the evening. We chatted away as we ate another spectacular dinner prepared by the Revis Family. It was great to see and hug the girls that I haven't seen in literally 15 years. (I mean.. that is insane.. and we are OLD!) As it was also great to catch up with the friends that I have kept in touch with. Everyone truly looked sensational and I swear the girls haven't aged a bit. I believe that they have even become more beautiful as many of them have entered into the wonderful journey of motherhood. Shannon, with her makeup on (I don't think I have ever seen makeup on this girl) looked wonderful as she bent over to show us her bald head revealing the word "cancer" with a line through it. Her strength in dealing with her battle of breast cancer never wavering and this being her 2nd battle with this horrible disease, makes her all the more inspirational.


After filling our bellies with some great food and a beer or two, we decided to take it to the alley.. the bowling alley that is. What a riot this was. We had more fun goofing around and I swear it was as though those 15 long years of not being in each other's company all together never existed. I am sad to say however, that I do believe I got the award for being the worst bowler in the place. (Bowling.. not my forte) Renee, you are truly the most hilarious fun loving person I have ever met. Your zest for life and laughter are truly infectious. Alexis, you have not changed a bit and I swear you have not aged the slightest amount.. it was as if you were frozen in time for 15 years. Melissa, you are beautiful. Truly a doll and I can tell how much you love being a Mom. Jenn.. it has been years but you too, have not changed and it was great to see you out enjoying yourself. Missy, you always just make me laugh and I loved exchanging our stories of the trauma of getting our girls dressed in the morning! Nicole, you are so fun to be around. You are so silly it makes me feel young again to join in your goofiness. Alyson.. oh Alyson.. there is just nobody like you. You just have this gift of making everyone laugh by bringing up the most insane of things. The topics of discussion around you are just down right hilarious. Jill, my chaperon for the evening, you know how much I love you. You put up with all my drunk talk (after one beer) and you are the easiest person on the planet to talk too! I love being around you! Sarah, I didn't get too much time to chat with you, but for a woman who has just given birth to her third child, girl, you look amazing!!! Jenny, you know how much I love being around you as well. Even though you didn't get to come bowling, I love being around you as you are my glove box girl. I want to stick you in my glove box for rainy days and open it so I can laugh my pants off at your hilariousness! (Is that a word?) Plus you smell good.. LOL I need to order that!) Sandy, you are truly a remarkable person! You have stayed by Shannon's side through thick and thin. Supporting her and carrying the weight of the world on your shoulders. You are truly a special and caring person. Shan.. you know how much I look up to you. I think you are the strongest person I have ever met and I sit in awe of the way you have dealt with your cancer. I don't think I have ever, or will ever see anything like it. Your attitude towards life is undeniable. May you now have all the time in the world to mend and heal and how I look forward to the day when we can get a picture of us together.. with both of us wearing our curls. We must not let so much time go by before we do this again. Rollerskating.. here we come!

I came home just past midnight to see my adorable family all sprawled out on the couch. Billy had a night with the girls and they had a wonderful time bonding. He bought them the most adorable outfits from Gymboree and he did such a great job of picking them out. It really was the sweetest sight to come home to and it made me appreciate my life all the more.

Sunday was filled with dinner preparations (while watching the Pats squish the fish!) as we hosted my parent's 38th wedding anniversary dinner. Happy Anniversary Mom and Dad.. 38 years.. holy cow! It was great to have my parents and family over and I finally got a chance to feed my new niece, Reanna, a bottle. Poor Layla is not so fond of Reanna as she is such a little Mommy's girl, but I know with time those two are going to be the best of friends. Hannah flitted about with her Tinkerbell wings on and she had so much fun playing with Uncle Ra Ra.

I'd like to say a Happy Belated Birthday to Uncle Dave and Auntie Jill! I hope you liked your messages from the girls!

This week is going to be a busy one so I don't think I will be able to do much posting, however, I hope that everyone continues to stay healthy and that everyone enjoys a wonderful Thanksgiving with their families!