Mind Over Matter

I took the weekend to calm my brain and get reacquainted with a schedule.  A schedule that includes the words, "no".  I have to say, I do feel a lot better.  I have been reminding myself daily that I am not perfect.  That I don't have to "do it all" and that I CAN let things go.  What is it in me that makes me crazy if a bed isn't made or the laundry isn't done?  It helped to have a somewhat calm week to muttle around in.  I just keep reminding myself that life is too short to sweat the small stuff.. blue skies in, gray skies out.  I have been spending time with the kids this week.  Not sort of spending time.. like the half ass time that I usually try and spend with them while I fold laundry, work or make dinner.  Time like, getting in the sand box with them and letting them help make dinner.  Stepping away from my desk at work to turn a cardboard box into a house.. complete with doors and windows.  It has helped. 

Most days I feel like being a mommy is the best medicine a girl could have.  Yes, my kids run me ragged and can raise my stress level to an unchartable amount but these children can also give me an enormous amount of love and affection.  To see their little minds work and hear how they talk, how they learn, how they love.. is quite possibly for me, the biggest reward, heart filler, I will ever get.  I sat down at Layla's preschool this week to have a Mother's Day breakfast with her.  She couldn't do enough for me and got the biggest kick out of waiting on me.  I think we gave each other a million hugs and kisses that morning and I left that school with my heart full. 

I've also been trying to have a little more patience with Cameron.  Oh.. he is tough..  lol.. but I have been taking a step back and watching his little mind work and appreciating it.  Appreciating the fact that he is a wild man because one day that little wild man is going to do great things with all his bountiful of energy!

Hannah has had a great week and has only bared her grizzly attitude a few times.  She has been a lot of help this week and takes such good care of Layla and Cam.  She'll step right in and help out with them whenever they need tending too.  She also shocked me by giving me a kiss this morning before she left the car to walk into the play yard.  I have been asking her for two weeks and today, she did it without me asking.  All the other times she would roll her eyes and say "no" while she quickly exited the car... but today.. KISS!  I hope someday when she reads this she'll realize just how much that one kiss meant to her mommy!

I have been having a lot of flashbacks of the girls in their younger years.  I dont know if it is the fact that the birthdays are just around the corner.. but Hannah especially.. I have these pictures of them that I had taken stuck in my head.  One when Hannah was 2 or 3 and we went to Gallilee.  She was prancing on the beach in her gray Block Island sweatshirt... with a pink bow practically taped to her scalp with no hair.  Layla, when she fell asleep sitting in the high chair with Pastena all over her face.  And then I get scared when I really try to remember what they were like at certain ages and it gets harder and harder for me to recall.  I'm trying to remember when it was just Hannah.. what were bath times like?  I do remember that was the time I would take with her to teach her new things.  Like her letters, her name, songs, etc.. You Are My Sunshine.. lol   But what were our conversations?  Did she tell me she loved me all the time?   It's even harder to remember the times when it was just me and the girls.  I remember the beginnings of it.. but that's really all.  sigh... is it the exhaustion?   I feel like I could nod off at any point throughout the day.  I really don't get a good night's sleep.. maybe that's why I function in Zombie mode most days?  I can't imagine how comatose I would be if it weren't for caffeine.. my SwingJuice.  etc..

My Layla baby (yes she is 5 and I will always call her my baby-lol)  has also been having some more GI issues.  I didnt think it was much before and kind of just let it go, however, the issues have been more and more frequent and I am starting to think that her Eosinophilic Esophagitis is having a flare up.  She had been doing so well that I almost forgot she was diagnosed with it a few years back.  She started gaining weight, came off the million dollar formula and started growing.  Billy and I started connecting the dots and counting the times she has had issues and have written down what she ate prior.  Something is up.  Be it the seasonal allergies (which are horrific this year and I am ready to scratch my eyeballs out despite taking meds) or the fact that there may be a new food allergy present....  We head up to Boston Childrens in 2 weeks to figure it all out.  I am dreading the endoscopy.. dreading it.  But we will do what we have to in order to get my girl feeling her best! 


Alright.. Im off to go enjoy my time... xo

Blook Work Results

Yay, I heard from Dr. Lee today and received Layla's blood work results.  It took me a bit to process the information and actually figure everything out but the short of it is this:  She doesn't appear to have an immune system deficiency.  She does have a Vitamin D deficiency which is mild and can be treated with a multivitamin with extra Vitamin D.  Easy fix and this is quite common for children with asthma and food allergies.  An easier fix would be to move to Florida and play in the sunshine every day... although the likelihood of that happening is slim to none.  While she tested positive to tree nuts and walnuts back in 2010, the blood work did not show this allergy this time.  However, I think we will be avoiding them just in case.  We could do further testing into this, but at this rate I firmly believe that avoiding them would be our best bet.  She is also still highly allergic to peanuts.  (darn) So it looks like we will still be on high alert in that department.  Dr. Lee also feels that she needs the 23-valent Pneumovax Immunization... which when I researched what on earth this meant, I think it simply means the Pnuemonia Vaccine.  (Still looking into this to make sure I'm right)After receiving this vaccine, he then will do follow up blood work to retest her immune system.   

Where do we go from here?  Well we have a follow up with Dr. Lee in 3 weeks.  From there we will see how her current cocktail of meds are working out for her.  She is currently in the middle of yet another asthma bout, however, upon checking her Pulsox yesterday, we seem so be keeping a big attack at bay.  She's on the neb every 4 hours and we have been extremely strict with making sure she is getting her inhalers twice a day along with her Singulair.  If she should continue to have these bouts then we may have to add in an Advair or something of those sorts.

We also have a follow up with Dr. Verhave in 3 weeks for the EE recheck to see where we stand with that and if it is contributing to her asthma and allergies.  I am curious to see where we stand with this but I have a lot of anxiety about putting her through yet another endoscopy now that she is two years older and can process more of it.  That is not going to be a fun day.  So back to Boston we go and it sounds like we'll be spending some time up there over the course of the next several months.  I'll say again how fortunate we are to have this hospital at our finger tips and only an hour away. 
 
I truly hope that I am not missing anything here.  I lay awake at night thinking about this poor kid and what I can do to help her stay well.  I rack my brain to see if there is something we are missing or something more we could be doing.  I just want this Ravioli well. Period.

Other than that I am just continuing to plug along with work, planning the Father Daughter Dance for Hannah's school, planning Han's 1st Communion, and realizing that the Cannelloni is about to be TWO in only a few short months.  My oh my!

Here are the Blood Work results.  I like to post them here so when it comes a time to compare, I'll have them in a safe spot!  ;)

Layla's lab results are below. Her blood counts show no changes concerning for an underlying immune deficiency. Antibody titers were adequate to 1 of 14 pneumococcal serotypes as well as to tetanus and Hib (PRP). Immunoglobulin levels were normal. Overall, there was the immune evaluation revealed no significant issues.

She has a mild Vitamin D insufficiecy and postive test to peanuts. Tree nut testing was negative.

Recommendation: I would like to further evaluate her immune system to see how well she responds to the 23-valent Pneumovax. This immunization can be given in your pediatrician's office. If not available, then it can be given at our clinic in Children's Hospital. Once this is done, she will need to have repeat measurement of antibody titers one month afterwards.
I also recommend that she start a multi-vitamin containing Vitamin D. Regarding tree nuts – she had a positive walnut skin test in 2010. If you are interested in giving her tree nuts, then she should come back to our clinic for tree nut testing. If negative then I would want to do a challenge to walnuts. If she passes that, then she will only need to avoid peanuts.




04/05/2012 16:29
WBC 7.50 K cells/uL 5.98 - 10.80
Hemoglobin 12.1 g/dL 11.1 - 12.9
Hematocrit 36.0 % 31.8 - 37.0
Platelet 349 K cells/uL 208 - 410
MPV 7.8 fL 7.3 - 8.0
RBC 4.26 M cells/uL 3.89 - 4.67
MCV 84.6 fL H 77.7 - 84.1
MCH 28.4 pg 27.0 - 29.6
MCHC 33.5 g/dL L 34.0 - 35.6
RDW 13.8 % 13.0 - 14.2
HDW 2.51 g/dL L 2.69 - 3.17
Absolute Neutrophil Count 1.64 K cells/uL L 2.29 - 6.36
Absolute Lymphocyte Count 4.91 K cells/uL H 1.46 - 3.78
Absolute Eosinophil Count 0.32 K cells/uL H 0.02 - 0.20
RBC Morphology Yes NA
Neutrophil/Band 22 % L 34 - 78
Left Shift Absent NA
Lymphocyte 66 % H 11 - 59
Monocyte 4 % 4 - 8
Eosinophil 4 % 1 - 4
Basophil 2 % H 0 - 1
Atypical Lymphocyte 2 % 0 - 4
Anisocytosis, RBC 1+ NA
Microcytosis, RBC 1+ NA
Pneumococcal IgG Panel Interpretation See Note NA
Pneumococcus Type 1, IgG 0.46 mcg/mL NA
Pneumococcus Type 12F, IgG 0.28 mcg/mL NA
Pneumococcus Type 14, IgG 0.30 mcg/mL NA
Pneumococcus Type 18C, IgG 0.86 mcg/mL NA
Pneumococcus Type 19F, IgG 0.67 mcg/mL NA
Pneumococcus Type 23F, IgG 0.16 mcg/mL NA
Pneumococcus Type 6B, IgG 0.56 mcg/mL NA
Pneumococcus Type 3, IgG 0.49 mcg/mL NA
Pneumococcus Type 4, IgG 0.08 mcg/mL NA
Pneumococcus Type 5, IgG 6.48 mcg/mL NA
Pneumococcus Type 7F, IgG 0.28 mcg/mL NA
Pneumococcus Type 8, IgG 0.18 mcg/mL NA
Pneumococcus Type 9N, IgG 0.08 mcg/mL NA
Pneumococcus Type 9V, IgG 0.28 mcg/mL NA
PRP (Polysaccharide Ribose Phosphate) 5508 ng/mL NA
Tetanus IgG 1.73 IU/mL 0.15 - 7.00
IgG 667 mg/dL 600 - 1500
IgG1 427 mg/dL NA 290-1065 -
IgG2 85 mg/dL NA 28-315 -
IgG3 29 mg/dL NA 4-71 -
IgG4 31 mg/dL NA 0-90 -
IgA 59 mg/dL 50 - 150
IgM 102 mg/dL H 22 - 100
IgE 159 units/mL 0 - 200
Allergen, Almond <0.35 kU/L NA
Allergen, Brazilnut <0.35 kU/L NA
Allergen, Cashew <0.35 kU/L NA
Allergen, Hazelnut <0.35 kU/L NA
Allergen, Pecan <0.35 kU/L NA
Allergen, Pistachio <0.35 kU/L NA
Allergen, Pine Nut <0.35 kU/L NA
Allergen, Walnut <0.35 kU/L NA
Allergen, Peanut 13.90 kU/L NA
25-Hydroxy Vitamin D 22.9 ng/mL L 30.0 - 80.0

Last but not least... HAPPY BIRTHDAY BILLY!  Wishing you many more years of happiness and health!  XO

Easter 2012

Tub time! 

Word Parade Day 

My little Bunny 

The biggest welt on her back is from the horse allergy...  still boggles my mind 

TY Easter Bunny! 

My latest creation

Surprise Robbie Dobbs!  Mom and Dad flew home for your 40th!!! 

My Cherubs! 

Quick Update

Just a super quick update as to what transpired in Boston with Layla.  She was retested for allergies and we concluded that in unison with the peanut, tree nut, soy & cat, she is also allergic to dust mites, tree pollen, dog and severely allergic to horse.... yes horse.  As if she has ever been within 10 feet of a horse.  Go figure.  Horse was definitely the worst as the welt on her back was at least 3 x 3 inches.  I am waiting on blood work to come back in regards to some other issues as well concerning a vitamin D deficiency and an immune system deficiency.  I am also in the process of making a follow-up appointment with Dr. Verhave.  If you remember a few years back Layla was diagnosed with EE (Eosinophilic Esophagitis).  I had thought that had resolved itself since she is finally eating better and has started to turn the corner with weight gain.  However, Dr. Lee strongly felt that we do a follow up endoscopy to see where we stand with the EE since it can also be known to have little or no symptoms and he feels as though the asthma is connected to it.  So we will be heading up for that follow up as well as to see Dr. Lee in 3 weeks.  Layla was a trooper throughout the testing and blood work even though I felt as though we tortured her a bit.  The kid has good lungs!  LOL  My friend Shannon rode co-pilot with us and was a huge help with the visit.  It was so nice to have someone along for the ride!  Layla was easy peasey during the ride and very cooperative.  I'm so lucky with her!

She currently started with a cold and has had a low grade fever the past several days, although she seems to be functioning fine.  She has had the dry cough but we seemed to have kept the asthma at bay by doing the Neb treatments.  Hopefully we can continue to keep it controlled and get her through it quickly! 

I'll update more once we have the blood work results in!

Ciao!  Hope everyone had a lovely Easter!

Tomorrow

Layla has her Boston Childrens Hospital appointment tomorrow.  I am anxious to get to it.  I have spent the week trying to keep her healthy.  Fingers crossed we will prevail in that department.  I did hear her coughing a bit last night, but she seemed fine this morning and actually quite happy to be participating in her school's Hop A Thon to support Muscular Dystrophy today.  Although her favorite hopping sneakers somehow alluded us this morning and were no where to be found.  They adorned her feet just yesterday and today... Poof... vanished.  I was able to dry her tears and find a smile on her sparkly face by the time we dropped her off at school.  I hold a lot of hope for this appointment mainly because I want to do everything in my power to keep this child out of the ICU.  I'm not up for that visit again and neither is she.  I want every option explored and I want to figure this thing out.  I'm tired of her constantly being sick just as she tired of constantly being sick.

The other two boogers are doing well.  Hannah spent the weekend on Long Island with Daddy, Auntie Jill and Uncle Dave.  She got to see her first Bruins game at the Coliseum and had quite the time being the center of attention.  I'm glad she got to have this time although I did miss her quite a bit.  It is Reading Week at her school this week and she is having a grand time involving herself in all the activities.  Mr Cam...well is Mr Cam.  Crazy, loud, into everything.... yet I wouldn't have it any other way.  I really do think it is just a phase and although he can certainly give me a run for my money, he is so lovable and so darn cute.  He reminds me so much of Hannah at this age with his intelligence and humor.  He is so verbal now and Lord if the child sees a truck and you don't acknowledge it!

Billy and I celebrated our 8th anniversary yesterday.  If you call American Chop Suey a celebration!  Tuesdays are the worst schedule wise.  Hopefully we can find some quiet time next week for the two of us to head to dinner and actually acknowledge the fact that we have been together EIGHT years! 

Other than that I am sitting here trying to calm my anxiousness about the next several crazy days.  We have a bit of a hectic schedule and I am trying to figure out how I am about to get everything done.  I am certain it will get done I just need to talk myself through it.   Take a deep breath and be grateful for the day.  This too shall pass...

DANG IT!

I swear if I could take back the past two weeks I would.  Turns out that Hannah's ear was so bad the doctor didn't know how she wasn't crying about it.  Crying?  The kid at SEVEN can't even verbalize that her ear hurts!  So all the yelling.. all the punishments, all the stress on her and us... is because the kid can't verbalize pain.  Maybe because the kid was in so much pain as a newborn, she can't distinguish it!  So as I choke back the lump in my throat and the guilt rising in my gut, I have come to the decision that it is time we take her back to Boston.  I don't know how Billy will feel about this, but I, we, owe it to her.  I should have known.  She only ever acts this terribly when she has an ear infection.  I am not saying that she is not a tough kid and often needs discipline, but these past two weeks have been awful with her and now I know why.  I just wish I could have saved her from it all.  I feel so guilty for waiting so long to take her.  Both tubes are out.  Grrr.. and it was AGAIN the left ear.  Hmmmmmmmm how many times have you heard me say this....That left ear tube is deformed.  I know it is.  The hemangioma deformed it.  She is seven and still needs tubes.  Doesn't anyone get that this is going to be a long term issue?  We need to find a long term solution before my kid loses hearing over it!!!!  My heart is telling me to go back to Boston.  Push for an MRI and start talking to doctors about some of her behavioral problems being linked to what she went through as a baby.  I am her mother.  I won't stop til we have some answers and get this straightened out.  She deserves more and I am going to give it to her.  Dang it, I'd like to slap myself upside the head as I am so mad at myself for not listening to my gut and taking her sooner!  That being said, I am hoping that after a few more days of antibiotics, she will start feeling better and we will have our Hannah back. 

I know I will catch some flack for this because I know people think that it is no excuse for her behavior.  (Not that I care what people think but...)  I would just like you to take a minute and think about what this kid has been through.  She was a mere two weeks (or sooner) away from losing her life.  The pressure was so built up in her head that she was on the verge of suffering a stroke and seizing to death.  She had a blood clot on her brain and these Hemangiomas (tumors) everywhere all over her brain.  Wouldn't it be likely that some of these issues could cause her to have some behavioral problems?  Especially since she can't distinguish pain in this region?  I am not condoning her behavior and it is dealt with, but at the same time you have to understand that this is her way of communicating with us that something is wrong.  She lashes out because that is the only way she knows how to express it.  That's all I can say.  I know this is what is going on and that is all I will say.

She let me put her hair up in the doctors office... it looked so cute!

The girls were also picking out bedrooms for the new babies!!!  We'll get to that in a second....  Looking at this picture I can even see it in the bags under her eyes.  My poor baby!

My purple bundle!!!

and then there is this guy... who more recently likes to strip his clothes off... OYE

I took a break from de-wallpapering last night and created this masterpiece!  I was so proud of myself and I love how it turned out!

AND NOW ONTO DEM BABIES!!!!!  Caiden and Madeline have arrived!!!!!  Caiden Stephen weighed in at 2lbs 8oz and Madeline weighed in at 3lbs 5oz.  Both are doing well and will obviously be spending some time in the NICU being that they are 9 weeks early but THANK YOU JESUS for bringing them to us safe and sound!  Mama and Papa bear are also doing well, although Kirsten is my HERO for being in labor for 48 hours and enduring it!  YOU GO GIRL!  Congratulations YOUNG FAMILY OF FOUR!!!!  We LOVE YOU!

Caiden

Madeline

xo