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! 

Layla baby

Miss bit seems to be doing better today.  Although sluggish and sleepy, her breathing seems to be good.  I took her on Friday to the Pediatrician and she was still very tight and wheezy.  We upped her treatments again and I continued them throughout the night waking her every 2-3 hours for them,  It was a bit of a long evening.  I took her back to the Pedi on Saturday and they were happy with how she sounded.  Yesterday, I officially gave both her and Cam their last doses of Prednisone so I am hoping that in a few days once it is out of their systems, all will restore to normal at the Murphy household.  Maybe Mama can get her some sleep? 

I have a call into Boston to see if we are better off at their Allergy Center or their Pulmonary Center.  Again why I love BCH... they have specialist in each aspect of every disease possible.  Hopefully we can get an appointment in the near future and see what else we can be doing for her.  In the meantime, I seem to be a bit of a stress ball about the situation.  Borderline neurotic.  I can't help it.  I don't care what people say or think about me.  I am going to do whatever is humanly possible to keep her as far away from her triggers as possible.  At least until we can figure this thing out and find out exactly what her triggers are.

...and I just got the callback.  She's meeting with John Lee of the allergy clinic on April 6th.
That's all I have for today.  Happy Monday!

This is how we spent most of our weekend

My little Leprechaun

What happens when you live in a house full of girls!!! LOL

Layla

Soooooooooooo  it seems as though we have had a few traumatizing days in the Murphy household.  Tuesday night, Billy and I were up all night taking care of both Layla and Cameron.  Cameron woke up out of the blue barking like a seal.  Now I know both of my girls have had croup in the past, but I don't think I have ever heard the cough like this.  Billy was totally freaked out.  Layla was having yet another asthma flare up and just kept coughing so I knew we'd be calling the pediatrician in the morning.  To be quite honest, Layla has had these flare ups quite often the past several months and for the most part, I usually feel as though I have them under control with meds, nebs, etc..  I really just made an appointment for her just to make sure her oxygen level was ok and I was mostly concerned about getting Cameron treated.  In we go at 11:30 and by the love of God we were seeing Dr. Sowa.  We hardly ever get to see her anymore as she is in several different offices.  Fairly quickly it is determined that Cam indeed has the croup and we'll just give him some prednisone.  In the meantime, the nurse does the Pulsox test on Layla and the level is reading 80.  I could see the nurse getting a little nervous although she was trying to hide it.  She runs to get another machine and again it reads 80.  We start her on a neb right away and and the O2 reading goes up to 84-85 and then drops down again.  They put her on another neb back to back and Dr. Sowa says, "Hey is there anyone that can watch Cam for you because I am thinking you're going to make a visit."  Of course she says this so calmly,.  Again, why I love her.  She knows just how to handle me and exactly what to say.  Especially going through everything I did with Hannah.  So I start making phone calls to see who can watch Cam because I know this means we are heading to Hasbro.  Thankfully Auntie Paula was not working and we made plans to meet in Smithfield so I could head to Hasbro with Layla.  I tell Dr. Sowa the plan and she looks at me wide eyed and says, "Um, can you have her come here to get him because you're about to leave."  In walk the EMT's.  I quickly make the phone call as the nurses grabbed Cameron who was screaming his head off.  I muster up an excited voice and manage to tell Layla that we are going on an adventure.  I think my voice only cracked once.  She got excited which was all I needed to keep going.  "Yep, baby an adventure like Dora and Boots!  Wait til we tell Hannah!!!!"  I gave Cam a kiss and only had about a second to panic about the fact that I was leaving him at the Dr.'s office alone.  Granted he was in the best of hands, but if I had more time to think about it I would have been a mess.  His screams were breaking my heart.  Layla was being strapped into a car seat on a stretcher with a smile on her face.  God bless her and her brave soul.  I jumped in and off we went.  She was on her third neb at this point and she was so good about it.  I just kept talking to her and telling her how cool it was that the sirens were on and how I couldn't wait for her to tell Daddy all about our adventure.  I quickly texted Billy and told him what was going on.  I asked him to please call Auntie Paula to make sure Cam was alright and that I would fill him in as soon as possible. 

We were admitted to the ER around 12:15 and they started another neb.  I think she had 6 in total before they decided they needed to do something else.  Her chest was caving in when she was breathing and her breathing was extremely rapid.  This was probably the only time I started to really panic.  Watching her little body working so hard to breathe was an awful sight.  The doctors for the most part were being so calm although they were concerned about how much her chest would suck in when she was trying to breathe.  I seriously wanted to scream and tell them all to get in the room and fix her.  I guess when you're in these situations you tend to lose your cool while the professionals are taught to remain calm.  Her O2 was still lingering at 88-89 and so they put her on oxygen.  I did like her ER doc and she finally decided to try something else.  They decided to give her a muscle relaxing med intravenously.  Its the same med that they use to stop preterm labor.  They put the IV in and began the Magnesium Sulfate.  (Again such a trooper with the IV.  It helped to have Princess stickers to cover it with!)  Only then did I begin to see a difference in her breathing.  It relaxed her muscles enough so that she wasn't struggling and working so hard to breathe, allowing the meds to get to her lungs much easier.  Finally, she broke a 90 on the Pulsox.  It was around this time that Billy arrived and I was thankful to be able to walk outside, get a breath of fresh air and make some phone calls.  Thankfully Cameron was doing well, although it did take Auntie Paula and three nurses to get him in the car seat.  Yep, I pretty much traumatized him.  Grammy was able to pick up Hannah from school and she was all set, so back in I went after updating the rest of the family.

She was admitted to the Pediatric Intensive Care Unit around 4:30 and we got settled up there with some great nurses.  She was breathing much easier and by now I was much calmer. She was put on a 3 hour continuous neb.  Let me tell you, this kid is a Rock Star.  Holding that tube in her mouth for three hours.  A four year old.  Imagine.  This child is so special.  Breaks my heart that of all the things I could have passed down to her, it was my asthma.  She's so little and frail and yet so full of love.  I can't imagine my life without her.  She is one of a kind.  I jumped in the hospital bed and just held her.  We were able to watch movies and that was perfect for my princess who was still wearing a tutu at this point!  While her breathing was much better, the steroids began to take over.  Anyone who has ever had a child on Prednisone, knows how mood altering this drug can be.  A miracle for healing, a devil with it's side affects.  Around 2am she woke up screaming, crying and kicking.  (I had flashbacks of Hannah)  For three hours nothing would calm her down.  It wasn't until about 5:30 am did she finally fall back to sleep.  She woke up at 7am bright eyed and bushy tailed, "Good Morning Mommy!"  Mommy was a bit slower to rise.. LOL  Her Pulsox had gone up to 97!  Yay!  We played with toys and colored before we were given the news that we would be able to break free.  Dr. Sowa came to visit and helped to come up with a plan of action.  #1.  Keep her in a bubble  #2.  Head up to Boston Childrens and get her a damn good asthma specialist and #3.  Give Mommy a large glass of wine! 

Daddy and Cam came to get us and we quickly got settled at home.  She had a decent night and was able to sleep however she did wake up very wheezy and tight.  We are heading back to the Pedi this afternoon for a follow up so I am hoping we will be at a good Pulsox rate and that it's just going to take a few more days for her to turn the corner.  We also need to get her on some antibiotics for her double ear infection.  I forgot to mention she had that as well. 

So now emotionally I am all over the board.  I'm pissed that she got this trait.  All of her meds have been upped obviously and I know that this is what she needs.  However, the side affects are going to be brutal.  My non sleeper to begin with, I fear her sleeplessness will only get worse.  These meds make you very jittery and speed up your heart rate.  No sleep equals a cranky kid.  They also make you snap out of the blue.  She's just so sweet and loving, I don't want to see that change.  I'm also a flipping mess now thinking about whats in store for us.  We are heading into what is supposedly going to be the worst allergy season to date.  What does this mean for her?  How will I know when it's time to head into the ER?  Seriously, I am getting my own Pulsox Machine.  I don't give a damn if I make myself crazy with it.  I'd rather be crazy checking her all the time then wondering, should I take her or not.  I seriously want to keep her in a bubble and I'm going to have to make some better decisions for her and keep her away from things that trigger her attacks.  I am hoping that people will be understanding of this. 

The whole time we were in the PICU I just kept thinking Thank God her stay is only temporary.  I cant imagine the families that spend months on end with children in there.  The families who have to watch their child suffer with cancer day in and day out.  I was very grateful to have the Lord looking over us and protecting us.  My heart truly goes out to those families who have to endure watching their child so sick.  I'm thinking that when the dust settles, we are going to need to be a little bit more involved with Hasbro and do some feel good fundraisers.

For now, I'm just going to curl up with my girl and watch some Scooby Doo...

All my love..


                                                                        Being Brave

Neb after Neb 

Finally a popsicle! 

Good morning Mommy!

Maybe she'll be a doctor someday???? 

YAY!  Breaking out!  Riding home with my new doggie "Adeline" 

Home Sweet Home! 

Happy to be with her sister again!