Monday, October 12, 2015


Ava isn’t attached at my hip anymore.

Healing… feels good.

Lena and Ava played together all day today. Which gave me the opportunity to just rest.


I’m not any worse per say….so that is positive.

But I’m still not 100% better by any means yet.  I still have ear pain (which is getting very old and trying my patience!) and still have a headache and had the chills all day.

The end of the day seems to be the worst and overnight.

The lesion on my cheek is almost ready to break open and then it can crust over and I won’t be contagious anymore to those who haven’t had the chicken pox. All the other spots have already started to crust over. I’ve had the lesions on my scalp for at least a week already and didn’t know what they were….they just really hurt and I felt lousy but didn’t know why.  So I’m probably about 2 weeks into this shingles business already.  So hoping that I’m at the lower end of “typical” 2-6 week period that the symptoms last for.

Hopefully I will start having energy and feel better SOON.

Some lovely ladies from our home group have insisted on bringing us some meals this week. They have been there for us through many many trials and have always showed us such love through providing meals for our family when we are down and out.

And the first one arrived this evening like a truck load of food!


The boys eyes just bugged out!!! We NEVER get such goodies from pizza shop. There were cheeseburger subs, wings, pizza and even a GF sub for Mama. Thank you so much Macri family! <3

Ava did sleep in her own bed last night for the first time since her surgery. (Daddy was so happy as he got his nice comfy bed back! lol)

I put the monitor in her room to comfort her that if she needed me she just needed to call.

But she slept all night!


The swelling in her cheek has really gone done in size.  She is eating more at one sitting but she still wants me to feed her.

She just is very cautious and doesn’t want to bump her lip in any way.  So I kinda just drop the food into her mouth.


But honestly I don’t mind at all… is good for the “re-bonding” that needs to happen from what we went through together on surgery day.

I’m very thankful for a “lighter” week on my calendar.  I was able to clear my schedule for the entire week and just be still and recover.

Thank you for all the love and prayers.  I have felt them over the past few days! <3

Sunday, October 11, 2015


Kids amaze me in how resilient they are.

Today is post-op day 4 and Ava is doing SO well.


She didn’t even have any Tylenol today for pain!!

We still have to do the liquid antibiotic….which she hates. And the antibiotic ear drops….which she hates.

But those will soon end and then it will just be the soft diet and keeping the site clean.

And keeping her from running and jumping on her leg.

But she is still pretty cautious with it and I can tell if she moves “wrong” it hurts.

Today Daddy was home so I was able to rest a lot.


They worked at their rock growing experiment.


Tonight as I was feeding Ava her chocolate pudding she was sticking her tongue out really far.

And we both remarked how cool that was!


She can now do a better pointy tongue tip!!!

We should have clipped her tongue tie years ago!  I think this will really help in her being able to make some better sounds!

She tells me how funny it feels and she needs to “build up to it.” lol

I wish my old body was as resilient as hers.

I don’t feel much better today….but believing and hoping that come tomorrow morning these stupid shingles will be over and done with.

(I know….wishful thinking….but a girl can hope!)

A new spot showed up on my face…..bummer.


What doesn’t kill you makes you stronger right?!?!?!?

Saturday, October 10, 2015


I feel like Job.

Ok, so life isn’t quite as bad as what Job had it….I realize that.

Thankfully I still have my family.

But.  This is hard.

I’m sorry to complain…..I know I’m supposed to look at life as “half full” and all that.  I know that “this too shall pass.”  But right now……life just really hard.

I’m in a lot of pain and discomfort.  For those of you who suffer from migraines I now “get it.”

And I’m so sorry.

I just want to crawl in my bed and rest.  I want to pull the covers up and block out the world.

But that isn’t reality.

So I solider on.

I hope the nerve blocking medicine kicks in soon and helps with the sharp stabbing nerve pain in my ear!!

It feels like someone is stabbing me in my ear with a knife.

I just want it to go away!

In my research it said that shingles can come from stress (which I probably have had some of….but I haven’t felt overly stressed out) OR from the trauma of having a surgery.  So I think it was just the “perfect storm.”

The lesions don’t itch per say they are just painful to touch or bump them. Last night I noticed that I have a lot more all through my scalp and I have a new spot on my face. Sad smile

The main “discomfort” is the constant ear pain, the throbbing headache and just an overall feeling of malaise.

But add to that a daughter, whom I love dearly, but doesn’t stop talking for one second……my patience is being tried. I should a saint after this! lol

I asked her to please not talk to me for a just little bit.

She lasted about 5 minutes before she just had to say something. lol

Bless her heart.

But then Super G-ma showed up and took my chatter box to the  mall and out for lunch for a special date.

Thank you soooo much Mom.  <3

Ava Mei though is doing pretty good today.


She didn’t ask for any pain medicine through the night.  But she was crying and whimpering in her sleep. Sad smile

But at least we both slept better.

She even walked down the stairs this morning!

She is older and more mature this time around and even though she hates her medicine she can understand that it is to help keep her mouth from getting infected.  So she puts on her brave face and takes it.

She is also doing the antibiotic mouthwash like a champ!

She even got on the floor to play with her sister….the sister who has missed having a playmate for the last 4 days!



(I thought her pictures this morning were “interesting.”  Notice the guy lying down like he is hurt, and the two guys “fighting.” Kids draw their emotions through pictures a lot of times.)

I want to explain a little of what she is eating for my cleft Mama’s who are coming behind me and doing this same surgery soon.

Ava is eating….but when I say she is “eating” it is a VERY small amount at time. It is a full time job to keep her fed, medicated and hydrated.  Some things she is eating and enjoying: the squeeze yogurts, a small bowl of mashed potatoes (made with chicken broth for more nutrients)  a small fruit cup (with the fruit smashed and a smashed banana added to it. (She eats this over the course of a day, NOT all in one sitting.) So don’t expect your kiddos to eat a lot.  I also use a plastic food to feed her. And I have to push the fluids in her.

Today is post op day 3 and I do see a lot of improvement….she is stting at the kitchen table more doing some activities for longer periods of times.

We still did a lot of snuggling……


But I did make her get a shower.  Now, we are blessed with a walk in shower with a bench in it.  And that worked wonders and was a huge help.

She can’t soak in the bathtub due to her stitches in her hip area.  And she can’t stand for long periods of time.

So a bench works great in the shower as she wouldn’t have wanted to stand that long on her leg if we didn’t have it.

She said she has to get used to her tongue now that it is “free.” lol

Very curious if this will help with her speech clarity….


Dr. Samson called me yesterday and we had a very interesting talk about what the “mystery thing” that Ava puked up could be!

Basically he has NO IDEA what it could be.  He thought maybe she swallowed something awhile ago and it was just in her stomach and after he suctioned her belly after surgery maybe it dislodged it??

Maybe….but when I asked Ava she said, “Mommy, I would have told you if I swallowed something that big.”

So back to the drawing board.

Then he said that maybe it was something the anesthesiologist used…but he said they only use a gauze like material…not a waxy, pliable material like she brought up.

He is totally stumped and it is driving him crazy.

It is driving me crazy too!

He told me to bring it in at our post-op on the 23rd.  It is kinda disintegrating in the bag from the stomach acid but we put it in the freezer to hopefully preserve it.

Then he asked me to take a picture of the bone graft site and email it to him.

After I looked at the picture I was FREAKED OUT looking at Ava’s gum line. I saw a “white blob” of something sticking out and my heart just sank.

(For you btdt cleft mama’s you know the feeling!)

It was turning out to the the worst day ever…..and I was sooo emotional already from the whole shingles diagnosis.


It was the longest 10 minutes till Dr. Samson called me back.

Before I even could say hello he said, “The bone graft is FINE.”  That is totally normal.  That white stuff is some scar tissue (or something…I was so overwhelmed at the moment I didn’t really hear what he said) and said it will fall off.  But the site looks great, he can see the stitches….so there is no need to come in and have him check it.

I breathed the biggest sigh of relief.

And so did Ava Mei.

She was so worried that she might have to go through this again if it was the bone graft that she puked up.

He said that if it was the bone graft it would have been a more like a honeycomb looking material and it would have disintegrated into tiny balls in your fingers.

And this “mystery thing” doesn’t do that.

So we are SO thankful that the bone graft is still in tact and doing ok.

Of course we aren’t out of the woods yet in terms of it failing…..but at least for now it is still healthy and whole.

Praising God.

Even through all the messy stuff that is going on.

Friday, October 9, 2015


So I was just thrown a major curve ball….

Some backstory.

For at least the past week I’ve been “fussing” about a sore on the side of my head.  It hurt pretty bad but I have a high pain tolerance and along with everything else that has been going on I’ve just ignored it.


The past two days I’ve gotten shooting pains from that area.  My ear also has been really sore….then the soreness traveled the whole way down my jaw line.

I also have had really dry and gritty eyes.

And of course I have been exhausted.

But goodness…I have a child who hasn’t been sleeping good at night.  Along with the past 4 months of “drama” of course I’m exhausted. lol

**Josie’s surgery.

**My shoulder surgery.

**My mom having a heart attack (yes, I haven’t mentioned it but she did and is on VERY limited duty right now…but thankfully she is ok.)

**Ava’s surgery.

But Steve insisted this morning that I go to the doctor.

I’ve been putting some of Ava’s antibiotic ear drops in my ear but it wasn’t helping…and I could just tell it wasn’t a “normal” ear infection.  Besides I have no cold symptoms at all which seemed strange.

So I get to the PCP this morning (which I didn’t want to do AT ALL as I didn’t want to leave Ava but since they had an opening I felt I should go.)

She took one look at my sores and said: “You have shingles.”


And I said, “NO, there is no way I could have shingles.”

At which point she started asking me more questions like: Do you have shooting sharp pains at times coming from that area?  Do your eyes feel gritty? Are you exhausted??

Yes. Yes. Yes.

But I still didn’t believe her. (I’m a bit stubborn.) So she brought in her colleague. 

He took one look at it and said, “Yup, you have shingles.”


I’m to rest. (yah right)

She put me on Neurontin and Valtrex.

I’m only contagious to pregnant women and old people for 2-3 more days since I’ve had this for a week already.

Thankfully all our kids had the chicken pox vaccine so they are safe.

But I’m only 43 years old!

This sucks.

But now as I sit here and be totally honest I feel really horrible.  The pain is pretty intense.  I should have listened to my body better.

My PCP told me that where my sores are at there is a major nerve that runs down your face.  The shingle virus attacks your nerves… that is why it so painful there. 

There is concern I have a kind of shingles called: Ramsay Hunt Syndrome due to my inner ear pain.


I can’t imagine having more then these spots over your body.  Did you know that shingles doesn’t cross your midline?  So you only get it on one side of your body?

I always thought shingles started on your torso area:

The signs and symptoms of shingles usually affect only a small section of one side of your body. These signs and symptoms may include:

  • Pain, burning, numbness or tingling
  • Sensitivity to touch
  • A red rash that begins a few days after the pain
  • Fluid-filled blisters that break open and crust over
  • Itching

Some people also experience:

  • Fever
  • Headache
  • Sensitivity to light
  • Fatigue

Pain is usually the first symptom of shingles. For some, it can be intense. Depending on the location of the pain, it can sometimes be mistaken for a symptom of problems affecting the heart, lungs or kidneys. Some people experience shingles pain without ever developing the rash.

Most commonly, the shingles rash develops as a stripe of blisters that wraps around either the left or right side of your torso. Sometimes the shingles rash occurs around one eye or on one side of the neck or face.


THANKFULLY Ava has perked up today.

She still asked for Travis to carry her downstairs this morning.


(The emotional support dog is earning her keep this week. <3)

But after I got some more Tylenol in her she rested comfortably on the couch.

And then she sat at the table and actually ate some (very runny) mashed potatoes made in chicken broth. Her first “real” meal since Tuesday night.


And then her and her big brother got out a fun activity to do while I did some shingle research on the computer.


The boys are quite concerned for me and keep asking what they can do for me.

But life must go on.

A little girl needs her mommy to help her heal from her big surgery.

A teenager needs to go and do a tour of Millersville tomorrow for his college admission for the fall.

But other than that I’m really going to try and rest.

Doctor’s orders.

Post-op Day 1 (Thursday)

My poor baby…..


Today was rough.

She started the day puking and it didn’t get much better from there on out.

We literally spent all day together on the couch.

Lena was such a big helper to me as she would grab “the bucket” for me, or get me some water, or whatever Ava needed.

(The boys were big helps too but they did have school to do…but they took care of the “big” stuff….like making lunch and doing the dishes.)


She was given oxycodone for the pain.  And I made sure that she had something in her belly before I gave it to her….but I think that is what was causing her to throw up.

And after “the scare” we had around 5:30 we are done with the oxycodone and I will only do Tylenol from here on out unless she is in excessive pain.

And here is why:


(Sorry for the puk picture!)

But this is what “came up” after her last puking episode at 5:30 last night.

What the heck is it?!!??!


It was like a really soft material and it looked like it had teeth impressions in it.

So you know I called into the surgeon’s office right away. SO thankful Daddy had just gotten home and could take over for me while I was on the phone!


I didn’t get Dr. Samson but I did get the intern that was in the OR yesterday watching the whole surgery. And he had NO IDEA what this could be.

And there isn’t anything they can really do about it now anyways… it is a wait and see until we see Dr. Samson next Friday for her post-op. Sad smile

When I look at her gum line there are NO holes….everything looks “ok.”  The intern said that if it was bone graft material there would have to be a gaping hole….so no hole…but yet, what is it!?!?!?!?

He did order some Zofran to help with her nauseousness….I’m hoping that helps….but I do think it was either this weird “thing” in her belly OR the pain meds causing her belly to be unsettled.

After she puked this thing up her belly seemed more settled instantly.

So I was encouraged that after she puked at 5:30 she really perked up a bit and actually gingerly walked out to the table and sat with us as we ate supper.


And after some juice she wanted to put together her new lego set that the tooth fairy left her. Smile


(And just a quick note to my cleft Mama’s….see that water bottle on the table??? The one with the pull top?!!?  That is the only way I could get liquids into her nicely.  So I recommend having those on hand so you can “squirt” juice into their mouths! So thankful I just happened to have one on hand!)

But when I tucked her into our bed again around 8:00 she started crying big silent tears.  Then she looked up at me and said, “Can I have some medicine for my hip pain.”

Oh baby girl…of course!

We will see how Day 2 goes.

Thursday, October 8, 2015


Alveolar Bone graft surgery is a biggie.  There is no denying that now.

I honestly was in a bit of denial about what this surgery would be like… is on my top 2 of hard.

(Josie’s hip surgery being #1.)

Yesterday was a rollercoaster of emotions.

But we made it through!

Today I’m trying to focus on being grateful!


We are thankful that Ava could get this surgery….but it is so heartbreaking to see her in such pain and discomfort.

I was thankful that we didn’t have to report into the hospital until 11:00 yesterday morning…that gave me time to get the house in order and get supper in the oven for the gang.

Ava just wanted to snuggle in my bed and suck her thumb for one last time before we had to leave for the hospital.


Being first on the schedule does have its advantages though….you know that the surgeon won’t be running late.  So becuz we were second on the schedule we did have to sit a bit until we got called back.


Then the fun really began. (yeah, right) I could tell Ava was nervous all morning….but she was being really brave and enjoyed just watching TV while we got all checked in and had her vitals taken, etc.


But as soon as they brought the mask out I could tell she was shutting down….and I just knew we were going to be in for a fight.

And it broke my heart into a million little pieces.


So at that  point I asked for some “goofy juice” but they were ready to take Ava back to the OR and said it wouldn’t work in time. Sad smile

Now, hindsight is 20/20.  I SO wish we would have just done a poke and gotten an IV in and had the anesthesia given through that.  Hershey likes to tell the kiddos that they won’t have any pokes…..which is nice but with Ava there is something from her trauma filled past that she FREAKS out about having that mask put over her face to go to sleep.


And so as they were wheeling her back to the OR she started crying.  And crying.  And crying.

It was so sad. So the anesthesiologist asked if I would suit up and crawl into bed with her to comfort her and I could stay with her in the OR until they had her asleep.


Of course I would…..even when I knew it would be emotionally hard.

So we got back to the OR and we all realized that there was NO WAY Ava would allow us to put that mask on without a fight. Sad smile

So it took THREE of us to hold Miss Ava down as the anesthesiologist held the mask over her face. And after about 10 big breaths she finally stopped kicking and screaming…..oh my word.  It was the hardest thing to do.

I was crying. 

It was hard.

And I was there by myself.

For the Mama’s in my life who will be doing this surgery soon with your kiddos……I  know have some BTDT advice for you.

First:  Take someone along with you.

Daddy had to work….he was sending his love through texts but it just wasn’t the same. I needed him there yesterday.


Second:  Buy all the squeezable yogurts, applesauce, whatever you can find in those fancy new pouches!!!   I can just squeeze food into her very sore mouth.  They are the cats meow!!!  Totally worth the crazy price!


Ava was a trooper……but it is just painful. No getting around that.

She had a laundry list of things that she had done to her yesterday.

From Dr. Samson: He of course did the bone graft to her gum line.  He said her opening was HUGE.  It was at least an 1.5 inches wide!  MOST cleft kiddos are about 1/2 inch.  He harvests 10 cc’s of bone cancellous from their hip and he used every last drop in her mouth.

(Thankfully he didn’t have to go back in an get more out!) He also said that the timing of the surgery was perfect as her permanent teeth are just ready to erupt. 


He also clipped her tongue tie, he took off the nodule on her nose, her “tweaked” her scar tissue at the base of her nose and he pulled a tooth out. (of course the tooth fairy gives bigger presents if your tooth comes out during surgery! Winking smile)


His part took about 2.5 hours.

Then Dr. Carr, the ENT, worked on her ears.  Oyi.

Ava had a TON of hard, crusty wax build up on her eardrums.  So Dr. Carr had to literally pull it away from the eardrum.  So her eardrums are now raw.  Her left tube was blocked so she opened that up again (thankfully it opened and she didn’t need to put a new tube in!) and then Ava had a polyp growing on her right eardrum so she took that off.

So Ava now has to do the DREADED ear drops for 5 days.  Just one more thing to put her through. Sad smile

Thankfully they called me right back to recovery so I could be the first person Ava saw when she woke up.  And she didn’t rage at all!!! That was a blessing.  She woke up ok……


But if looks could kill.


I asked Dr. Samson why we weren’t staying overnight.  (I didn’t want to stay overnight….but in my research I was reading that about 1/2 the time hospitals keep patients overnight for this type of surgery and the other half are outpatient.  So I was curious and wanted to know what the difference was.

And he said it is the way he harvests the bone for the graft.  He uses a special technique that they have found isn’t “as painful” as the old way.  So they found that patients can go home and be on pain meds for 3-4 days and do well.

So around 6:00 I was ready to just go home.  Ava’s belly wasn’t feeling very good but I just felt like I wanted to be home.  And this is where I really wish I had Daddy with me.  I had to push her out myself….then I had to pick her up out of the wheelchair and put her in the Suburban.

Having someone to drive home with me would have been nice.

But THANKFULLY she waited to puk until Daddy was carrying her into the house from the Suburban.

She had swallowed a lot of blood… she puked 3 times after we got home.  Then around 10:00pm we carried her upstairs and tucked her into our bed (sweet Daddy slept on the couch.)

Ava “slept” (??) until about 5:00 this morning when she puked more blood. (In your head you KNOW why she is puking blood….but it is still unsettling.)

Then at 6:30 she told me her hip really hurt.  But I needed to her to eat something before I could give her the pain meds. She kept down some applesauce and yogurt thankfully… now she is resting on the “special” red chair.


Very thankful for big strong brothers who could carry her downstairs this morning as she wasn’t able to walk on her leg without a lot of pain. And for drivers who can run into the pharmacy for medicine for me.

Hoping the pain meds will kick in here and give her some relief.

She isn’t even 24 hours post-op yet… I guess all in all she is doing pretty good.

Time to go snuggle on the couch with her.

Thanks for all the prayers yesterday!!! I certainly felt them! <3

If you are interested in knowing more about what a alveolar bone graft is below is a good explanation:

What Is An Alveolar Bone Graft?

Some children who are born with both a cleft lip and a cleft palate also have a problem with the alveolar (al-vee-OLE-ar) bone, which makes up the gum ridge or front portion of the roof of the mouth. The alveolar bone is a thin layer of bone that forms the sockets around the roots of the upper teeth under the gum tissue.

When there is a cleft in the alveolar bone, it means there is a fistula (FIST-yoo-la) or hole from the mouth to the nose. This cleft in the bone and gums prevents teeth from growing properly and the floor of the nose from developing normally. Fixing the cleft to allow for proper tooth development is important to a child’s health because missing teeth can have a negative effect on eating, digestion, facial growth and appearance. In addition, a child’s smile is an important part of his or her personality, and missing or poorly aligned teeth can have a huge negative impact on a child’s self-esteem.

The alveolar bone graft repairs the hole in the gum ridge and stabilizes the bone arch, providing better support for the base of the nose and new bone for the roots of the developing teeth to grow into. The surgery usually is done when the child’s permanent canine teeth are three-quarters formed.

To do the bone graft, a piece of bone usually will be taken from your child’s iliac (ILL-ee-ack) crest, the upper ridge of the hip bone. The doctor will make a 1- to 3-inch incision  or cut in the skin just over the hip bone and in the bone itself to remove the inner portion of the bone. This part of the bone, called cancellous (CAN-sell-us) bone, is soft and pasty and can be shaped to form the patch that will close the hole in the alveolar bone. Gum tissue inside your child’s mouth then will be closed around the bone and sutures or stitches will hold the tissue in place as it heals.  (

(Another good article if you are interested in reading more about the alveolar bone graft procedure: