Daffodil Hill

We are in California right now, I think most of you knew that.  But it is a good break for this mama and just what our family needs at this time.

And the 18 hours in the car, with 4 kids, one nursing, one with diarrhea, one heavily medicated,  and one with a missing tooth, totally worth it!

We went to Daffodil hill today, it's only open about 1 month of the year and it is truly beautiful!

These photos are not edited, just exactly what I took with my camera

It's the little, hidden, unique places like this in California that make me love it!  Sure there are beaches, great food, great shopping, mountains, etc.  But I grew up going to the swimming holes, picking berries off bushes, going on adventurous hikes,  and smelling the aroma of gigantic pine trees, that's my California!

These are the only 2 photos I edited, and only slightly

 

And my Favorite

 

 So thankful for this day

Levi Paul {6 Months}

Levi, we just had your half birthday!!!

Well kind of.... February only has 28 days, and your half birthday is on the 31st, so I don't really know how that works?

You are my tiny guy, weighing in at just over 13 pounds!  You look so small still next to other babies, even babies that are younger than you look like they could eat you!

You still wear size 3 month clothes, and some that are even 0-3 months!

But you are strong and healthy!

You wiggle ALL over

You love kisses and grab my face with your mouth open wide, and attack me!  I sing over and over to you " I love your kisses cause their sooo delicious, gotta love Levi kisses"

You are very determined

You are Mr. Grabby Grabberton, which is a big reason why I had to cut my hair, but I still love you and I like my hair better anyway!

You got your first 2 little teeth, I knew you had to be working on something down there!

You also finally started solid foods, avocado being your first, and I might add the most delicious food you will ever eat :O)  You aren't a Goodlin unless you like avocados!  So welcome to the family my man, welcome to the family

You love sweet potatoes, only when mommy makes them though.... daddy's chunky version doesn't quite cut it

 There were some hard days between your 5 and 6 months, where we had to spend much time apart.  Your sister was sick in the hospital.  It was very rough on both of us.  You were not a happy camper about so many bottles and Grammy even resorted to feeding you with a syringe!! 

Man alive Levi, you are like by baby Monkey!

You look SO much like Maya to me, and there are so many similarities between the two of you!

Here is Maya at 6 months

 What do you think, twinsies?

You got to hang out with Grammy a lot this past month, you guys are pretty close

 You and Mr. Brocolli are also pretty good friends

 

Happy 6 months Little Levi!

 

I love you all the way from your head down to your toes!

Why it's so different

You say I'm strong
You say I have endured so much already
You say I will make it through this, just like I have everything else

But this time it is so very different

It is my child

It is my sisters child

You see, I can be strong for me

But now I have to be strong for her


My heart breaks and I mourn for her losses

The daugther that has already lost so much....

a mother

and now a normal healthy life

She is only 4

with the weight of the world already on her shoulders

with a life that has already been filled with obstacles, heartache and difficulty

I would take it all from her if I could

the shots

the pain

the strict diet limitations

the loss of a mother

you say she will never know any different because she is only 4

but she will know....

she will see the siblings around her

the kids at school

the ones that can have a cookie or treat without a thought

or  that can eat a meal without a shot or a finger poke

or the ones that didn't lose their mother

It will be harder for her, but not impossible

I pray that in the midst of her hardest moments she will learn to rely and lean on the Lord and not push away from Him

I pray that she will overcome this difficult hand she has already been dealt

I still pray for a miracle

To answer your questions

 I just want to answer a few questions and clear up some misconceptions.  So many of you have had questions, and great ones too, keep them coming!

(I promise blog won't turn into all about diabetes, it still "life with the Goodlins", this is just what is going on in our lives right now)

Ok for the questions here we go:

1. Did you give Norah to much sugar as a toddler, is that why she has diabetes?  

(Although no one has asked me this question I know it has run through some peoples  minds.)

Diabetes type 1 does NOT come from eating to much sugar.  In fact diabetes type 1 and 2 should have different names, because they are VERY different!  Type 1 is autoimmune, with no known cause, it requires daily insulin for survival, diet and exercise can help (just like for anyone) but they do NOT make Norah's diabetes ever go away.  Diabetes type 2 is more lifestyle induced and can really be controlled with diet and exercise, it can even go away. 
Diabetes type 1 cannot go away, ever. 
Make sense?

2.  Is diabetes in our family?

No, it is not really at all.  Not on our side, not on Norah's biological side, nothing.  Because type 1 diabetes can be hereditary this is the first question we were asked, but it is not in our family.  

3.  If it's not in your family, how did Norah get it?  

That is a great question.  Some people are just genetically predispositioned for diabetes type 1 and something triggers it, whether it be something environmental, chemical or viral.  We really don't know.  But what I do know is that Norah got a pretty bad virus in Decemeber and ever since then she wasn't quite the same.  The Dr.s can look back at her blood work and see that the diabetes started around 2 months ago, which would correlate with when she got the Virus.  It is not a particular or certain virus that can trigger diabetes 1, it is just any virus because it drops the immune system drops.  This is only an assumption, of course. But if you ask anyone with diabetes type 1 there was usually a virus just slightly prior to the start of their diabetes.  Norah's was slow onset, so her symptoms weren't even noticed until late January.

4.  Did Carrisa's (Norah's biological mom) illness as a child have any correlation with this?  

Carrisa did have an autoimmune disease called Kawasaki disease, totally unrelated and not at all in the same family as diabetes.  She did get sick at age 3 (so not to far off from Norahs current age), so it is very strange and heartbreaking to see something similar going on with Norah.....  I have read a few articles that have said that just having an autoimmune disease of any kind can pre-dispoition another family member to any autoimmune disease, but I don't know if there is any really basis to this and it is pretty far fetched. So to answer the question, I don't think Carrisa's Kawasaki disease has anything to do with Norah getting diabetes.

 5. Norah will be tested for Celiac disease and thyroid disease because they are in the same autoimmune family as diabetes

6.  I heard that there might be a cure for diabetes by taking a homeopathic regime of things, is this true? 

There is no cure, no diet, no magic vitamin, no cinnamon stick that Norah can take that will make the diabetes go away.  It doesn't mean some of these things can't help, but she will still need to take insulin for survival.

7.  Can Norah get one of those insulin pumps, I heard those make life easier without as many shots?  I've heard that too, and she will be evaluated in April for one, and it is totally based on patient compliance.  So it just depends on Norah, and how she will do with it, oh and insurance.  I'm sure you can all imagine what the price tag of an insulin pump might be, let's just say Norah will be getting her "car" a lot earlier than I would have ever expected.

8. Will you  be tested or have your other children test for diabetes?

No, not unless weshow some kind of symptoms.  

Since we are biogical aunt and cousins there really isn't a need for us to be tested.

9.  So can Norah ever have cake again? 

 Yes, as long as it doesn't have poison :O)

Norah can still eat most things, just in moderation, and great balance, and every bite has to be counted.  Birthday parties and big events are going to be very difficult for us to navigate, especially at first because Norah can't just have a bite when she wants.  It will have to be very thought-out out and planned.  But please, still invite Norah to those events because although they will be hard at first, what would be harder is for Norah not be included anymore.

10. Is there anything Norah can't eat?
Yes & No.
 Norah basically can't have anything that is liquid sugar: like juice, syrup (not even real maple syrup), honey, agave nector, anything liquid sugar, because it enters her blood stream so quickly and will make her blood sugar level go sky high (which is very dangerous).  
The exception is when Norah's blood sugar is low, then we want to give her a little juice or liquid sugar to give her a quick rise in her blood sugar so she doesn't have a seizure or go unconscious.

There is much for this sweet girl to learn. 
Our week has been filled with a lot of "no's" so I am doing my best to say "yes" whenever I can!

If you have any other questions please feel free to ask!

Norah's diabetes Diagnosis {Part 2}

Off to the hospital we went.  (If you missed part 1 read here)

 At least Norah and I.  Brett had to situate our other children.

I had nothing with me.  I don't think I was quite prepared for them to tell me to go to the hospital right away!

So we went, checked in through ER, admitted to the pediatric ward and then eventually sent up to the pediatric ICU (picu), since Norah's blood sugar wasn't lowering.  It was the best place to have Norah to manage her symptoms.  And as soon as we arrived at the Picu there was a warm welcome and embrace from all of the sweet nurses.  I knew instantly Norah was in good hand and she was, my only consolation for those 3 days.

And I was in survival mode.  It was all a fog.  I had no brain space to even have any emotions, I just needed to walked, one foot in front of the other, remembering to breath, to pump milk for Levi, to make sure to remind Papa to have Sarah go pee pee on the potty, to remember I needed to take bites of food, to drink water, to do a million things at once and then to listen to the piles and piles of information we were being bombarded with. 

But still completely living in disbelief of Norah's diagnosis.

Brett returned to the hospital after getting the kids situated, I need him there, not just for Norah and for support, but to have someone there with their brain screwed on!

Norah loved the experience at first: the attention, the tv in her room, the bed that moved! She even said "this is awesome!"

But as the hours ticked and Norah was not allowed to eat anything and she continued to get poked and prodded the tears began to flow, the frustration and tiredness came out and Norah just simply wanted to go home....... she cried " I just want to see my sisters, I just want to go home......"

No parent, no parent ever wants to see there child like this.  No matter what the circumstance, it is just heartbreaking.   You just want to wrap them up in your arms and absorb ever ounce of sadness and pain....... and our circumstance was much much lighter than many going on in rooms around us....

And the worst part..... I  had to leave.  I stayed for the longest I possibly could.  I battled on what to do.  She needed me, but so did my other children, and Levi really needed food, which could only come from me. I knew Brett would take care wonderful care of Norah, but I think it is the hardest decision I have ever had to make, to leave my child in the hospital...... and as I drove home in the blizzard I sobbed....

I went to bed that night hoping, praying that I would wake up and it would all be gone.....

 as night turned into day, and my mind couldn't turn off the bad dream did not go away

so I woke up, a heart full of heaviness, and had to get right into mom mode and figure out where my other children were going to go for the day.  After driving on a sheet of ice (again my favorite thing) to get Levi to a friends house, Papa picked up the girls and I headed to the hospital.

Upon entering I saw Norah's smiling face as she was just delivered breakfast!  There was nothing sweeter than seeing a huge grin from her, just knowing that she could have food now made everything better and warmed mamas heart!

I let Norah wear my jammies the first night since I could not be with her

And then our day was bombarded with nothing but information, education and how to be an at home nurse for Norah.  We were taught all about diabetes.  How to calculated her carbs, how to check her blood sugar,  how to know how much insulin to give Norah and how to administered it (shots).  We were given piles and piles of books, we met with a nutritionist and a family life counselor, we stared at each other in disbelief and remembered to breath.

We made it through that time by God's grace and with your love and prayers.  We had a wonderful nurse, who just loved Norah. 

 We had many visitors, including Norah's pre-school teachers, it was just so sweet that they came, both of their eyes flooded with tears as they saw Norah.

 

I'm pretty sure anyone's day would be better surrounded by these pretty ladies

 

Another pre-school mom brought Brett and I starbucks and PEI WEI (our favorite).  My works ladies came showering Norah with gifts and with more food!  My husbands boss even came!  A group of Brett's co workers put together a basket of gifts for all of the children, so sweet!

Friends even picked up my mom from the shuttle and brought her to the hospital to see Norah.

We even got to sneak Levi in for 1 feeding session and it totally brigthen Norah's spirits  

We had to stay an addition night so they could continue to monitor Norah's blood sugar, but at least we had my moms help now... so day 3 of the hospital was much a repeat of the same, poking, proding and lots of education and info

lots of finger pokes

 

 

Norah's favorite kitty from aunt Janice, she wants it anytime she has to get a shot

  f

 surrounded by love

 

At least we had a few minutes to for a manicure  

And then by Friday afternoon we got to leave  

 Despite the hardship of the few days, my faith and love in people only grew!  You, many of you reading this have reached out, have helped!  I was just shocked at the group of pre-school moms who reached out to help, moms who I only talk to 5 minutes a day as I drop off and pick up Norah, they were helping just like a family would.  Several of my close friends have stepped up from the mom with several young children of her own, to the mom in the middle of in-vitro fertilization, to the neighbor whose son has had significant health problems recently.  Oh and Mallorie, Mallorie the life savor..... our nanny I can't even begin to tell you all she has done to help!  And Papa, I am just still in awe of papa, who dropped everything to watch my girls all on his own.......You all didn't let your own hardships get in the way.

And now our new journey begins, the one that is more difficult than a few days in the hospital.  The one that starts a new life of living with a child who will need daily monitoring and injections for survival.  If there was ever a time I needed to remember that my children's lives are not in my hands, but His, 

it is now....