Prayers for a Friend

Jeremiah 17:14
Heal me, O LORD, and I shall be healed; Save me, and I shall be saved, For You are my praise.

It's been a long time since I have blogged. I have just lost what little motivation I had to do it these days. So only a very special reason could move me to do so right now. And here is that reason:

Meri is a dear friend of mine and her husband Ryan needs constant prayers. They just received the bad news that the cancer that Ryan had battled a few years ago, is back. With a vengeance. To make a long story short, Ryan now has 6 tumors in his brain, and many more in his lungs and abdomen. Ryan really needs a miracle and I truly believe he will get just that. But we all need to pray.

The Schuhmacher family has set aside tomorrow, 3/4/12, as a day of prayer and fasting. We ask you to please join in. However you pray, please pray for them tomorrow.

You can join the Schuhmacher Family's Miracle Facebook page by clicking the "Believe" button at the top of this page. There, you can read Ryan's story, get up to date information and share your prayers with the family.

We have also set up a donation page to help with medical expenses. We want to do all we can to help this wonderful family. You will find the fundraising widget on my side bar. Please donate whatever you can. Every little bit helps. Also, we'd love for you to put the widget on your blog, or share the fundraising site with your family, friends, co-workers, church family....EVERYONE you know. If you can't help financially, just know that your continued prayers are more than enough.

I'd also like you to please take the "Believe" button, which is also in the side bar, and put it on your blog. Just copy and paste the code. We would like to see this button shared on every possible blog in the DOC and beyond. We want the word to spread so everyone will join us in prayer. I know God will hear all of our prayers and he will be busy working on that miracle for Ryan.

To the Schuhmacher family...You already know this, but I have been thinking of you and praying for you non stop. I just know that God will answer our prayers for a complete earthly healing for Ryan. We will be by your side every step of the way. Whatever you need, whenever you need it, we will be there. I'm sending all the love and prayers I possibly can. I hope you can feel them. Your family has amazing strength and you WILL get through this. We already know how brave you all are. Just keep fighting and we'll all keep praying. Love you, friend.

 

What They Didn't Tell Us

Almost 7 years ago, when Bee was diagnosed with Type 1, we had to go through this 5 day long crash course in how to care for her.

We were told how to count carbs.

We were shown how to give insulin injections.

We were taught how to test her blood sugar.

We were told what was a good range for her.

But what they didn't mention was something we should have known. That the insulin that would keep her alive, could also do the exact opposite. It could also kill her.

I knew about low blood sugars. I was told a little about possible seizures and when to use glucagon. But I was spared the details of the worst that could happen.

I don't remember how long it's been since the first time I learned of a Type 1 related death in a child. But I do remember I didn't sleep well for weeks afterward. I was sad. I had a knot in my stomach. I worried. I cried for the family of a child I never even met. But mostly, I cried for my own child.

Since that first time, I have heard of SO many more children losing their lives due to Type 1. TOO many. One as recent as this week. This isn't supposed to happen! No one told me this was possible!

But it IS possible. And it DOES happen. And most people still don't get how serious this disease is.

I am sure the next few days are going to be filled with worry and sleepless nights once again for me. When this happens, it really makes me want to micro manage this disease even more. But does that even help?

All I can do is try. And hope. And pray.

Pray for the family of the 16 year old boy who was taken too soon. Pray for the families of all the other children who lost their lives. Pray that my child will wake up just fine every morning,

But mostly, pray that a cure is found soon. So all of us D parents can live without anymore worry.

Dear JDRF and Camp Soaring Eagle...

Back in July, we received an email from JDRF about a Diabetes Camp at Camp Soaring Eagle coming in November. I hesitated at first, like I have the past 2 years when I thought about sending Bee to the week-long Camp AZDA during the summer. But this was only 3 days. I could handle 3 days? Right?

Only 20 kids were being accepted so I quickly  printed off the paperwork, faxed it in to Bee's Endocrinologist, and hoped her Endo would get it back ASAP. And she did. Almost immediately (because she's awesome like that).

I was happy.

And nervous.

I actually took that first step.

The next step was to fax the paperwork to JDRF and then wait to see if she was one of the twenty kids accepted.

She was.

I was happy.

And nervous.

I finally told Bee she was going and she was THRILLED! I had 4 months to get used to the idea of her being gone for a weekend.

Then the time finally came.

Thank goodness for the support of my friends (one who was just as nervous and worried as I was) or else I would have cried like a baby right in front of her the day she left. (Well, I did get teary before she left, but I saved the actual crying for later)

Off she went, on that bus, without me. I was letting my baby go off to be taken care of by people I really didn't know. But I just knew you'd all take great care of her.

I was still nervous. You have to understand, this is my baby. My little girl who, even at age 11, has never slept over at a friends house. Has never been able to go to a slumber party. Has never been able to go anywhere for any length of time without someone I've trained to take care of her. Not many people want the responsibility of checking BG's at midnight and 2am. Or having to deal with the scariness of a low. So my girl misses out on a lot.

But this weekend, she got to feel like every other child her age. She got to leave without her hovering mom. She got to have fun with friends who know what she goes through every day. And she was very well taken care of by very capable and caring people.

And she quite possibly had the BEST time of her life.

I don't know how to say thank you. Thank you just doesn't seem good enough.

You made my child forget she had "extra needs". You made her feel just like every other child her age. You made sure she was perfectly fine all while having the best time ever.

And for that, I am forever grateful.

That smile says it all!

My last one...off to Kindergarten

She started school this morning,
And she seemed so very small.
As I walked there beside her
In the Kindergarten hall. 

And as she took her place beside
the others in the class,
I realized how all too soon
Those first few years can pass.
Remembering, I saw her as
She first learned how to walk.
The words that we alone made out
When she began to talk.
This little girl so much absorbed
In learning how to write.
It seems as though she must have grown
To girlhood overnight.
My eyes were blurred by hastily
I brushed the tears away
Lest by some word or sign of mine
I mar her first big day
Oh how I longed to stay with her
And keep her by the hand
To lead her through the places
That she couldn't understand.
And something closely kin to fear
Was mingled with my pride.
I knew she would no longer be
A baby by my side.
But she must have her chance to live,
To work her problems out,
The privilege to grow and learn
What life is all about.
And I must share my little girl
With friends and work and play;
She's not a baby anymore --
She's in Kindergarten today. 

~author unknown

Our Y2K Baby

Scott and I always joke that Bee, being born in the year 2000, has the "Y2K Glitch".

April 21, 2000 she was born.

4 months later she was diagnosed with Asthma.

19 months later she was diagnosed with a PAVM and had her first of 3 (so far) Embolizations.

2 months after that she was diagnosed with HHT.

2 years later, Type 1 Diabetes.

2 years after that, Celiac.

Now here we are with 2 (or more?) new things going on. It just keeps coming. One after another, after another.

So we joke about it. We laugh about certain things. We call her our Y2K Bug. She even wants to get "Y2KBUG" on her license plate when she's old enough to drive (gah!!!) She jokes about all of this with us.

After a rough night of high BG's, lots of pain and a mistake in taking her meds that resulted in a call to Poison Control and her being sick to her stomach all morning, I need to find some humor somewhere. Joking may sound really weird to some, but if we don't handle it that way sometimes, we will lose it.

Today is one of those days where I am finding it hard to find humor anywhere, though. Some days, it just doesn't help.

A little more info

I haven't blogged in a while. I have many reasons. No time, don't feel like it, every post seems negative lately, etc. I'm going back and forth between shutting it down and just waiting a while to see if I get out of this mood and start to love blogging again like I used to. I have been blogging for about 7 years (including my 2 old blogs before this one) and while I would hate to just stop, I am just not sure how much I'd miss it.

Anyway, on to the update. I have some new info on what's been going on with Bee. Not a lot, but a little. More than I had before.

We saw the immunologist again. He had her lab results. They checked everything they could possibly check. After going over a few things he finally told me that they checked her levels for a certain antibody that fights off infections such as Strep, Sinus Infections, Respiratory Infections, Meningitis, etc. There are 14 "serotypes" and they should have all been over 1.4. She had exactly one out of 14 that was 1.3. The other 13 were  below 0.3 so that's not good. He hasn't diagnosed her with an immune deficiency just yet, though. She has to have a "pneumovax" vaccine, then lab work 4 weeks later to check her "Pneumococcal AB Titers" to see if they have come up. If not, then she'll have another "pneumovax", then 4 weeks later more lab work and if those Titers haven't come up by then, then she'll need antibody replacement. That's all I know so far. So we're working on that. (This would explain the constant illnesses that seem to last forever)

Her joint pain (unrelated to the above issues) is still there, but not as often. The Celebrex really seems to be helping with the pain and stiffness. She occasionally has breakthrough pain but she's not in constant discomfort like she was before. She has good days and not so good days. But we are really hoping to figure out what is going on so we can have many more good days.

On top of the joint pain she has some new things going on. She's been refusing to eat for the most part. Every day results in frustration and tears. She is hardly ever hungry. She says eating makes her feel sick. Every day is a battle. She will drink, but she's just not interested in food much. She is never really hungry until dinner time but even then, she doesn't want to eat much.

She is also losing hair more than the normal amount. I notice it in the shower, when I comb her hair, on the floor, etc. She used to have really thick hair but now I can actually feel it getting thinner. Maybe it's just because it's hot out? I don't know. But we have lived in this AZ heat for a total of 6 years and have never had this issue before.

She's still tired most of the time. She's irritable. Sad. Moody. Could be the preteen years coming on, though.

She STILL, after over 4 months, has swollen glands and very swollen tonsils.

We went to her Endo appointment today and I talked about all of my concerns. I love how our Endo really listens. So tomorrow Bee gets more lab work to test her Thyroid, Her Parathyroid (because I had Hyperparathyroidism and had to have my Parathyroid removed last year) and she is also testing her for Addison's Disease. It's also Autoimmune and since she already has 2 Autoimmune diseases it's not really far fetched that she could have this too. It would explain so much!

So, more testing, more waiting, more praying for answers. I am happy that the Celebrex is finally giving her some relief, but I would just like to know what is causing all of this.

So, that's it for now. Thanks to those of you who still come by even though it's been quiet around here. I appreciate it so much!

Crawling out of my hole

It's been one heck of a month (or longer) so I haven't felt like blogging much. But, today I decided that even though I don't have all the answers yet, I do have enough info to update on Bee's current issues. Sorry if this post is all over the place. Between all of this, working late hours and 6 Drs appointments in 2 weeks, my brain is fried. I'm exhausted and I can barely think long enough to get out a post about all of this. So I apologize if I sound crazy and incoherent.

Most of you know Bee came down with some long lasting "mystery virus" about 2 months ago. A round of antibiotics, some tests and many visits to urgent care and the Pediatrician turned up nothing more than "most likely a virus". While the urgent care docs were ok with that diagnoses, her awesome new Pediatrician (Thanks Tracy!) was not. So she kept digging. Sure, kids get viruses with no explanation all the time. But this one was going on almost 2 months, and nothing was helping it. My poor girl was still miserable with extremely swollen glands and tonsils and nothing would help.

So, to make a long story short (on this issue anyway) her Pediatrician AND her Endo suggested she see an Immunologist because of this and past long-lasting and constant illnesses. So we made the appointment. (This was after seeing an ENT who is hesitant to take out her tonsils because she has HHT and she could have issues with excessive bleeding)

We saw the Immunologist last Monday and he listened to all of our concerns. Bee is now being tested to see if it could be an immune problem or an allergy related problem. But he agreed that it does sound like something is going on. (My poor girl missed 51 days of school last year due to being sick. FIFTY ONE! And she still managed to stay on the Honor Roll all year long. Yep. I'm bragging!) Anyway, we will find out the results of this testing at our next appointment in 3 weeks. Could be something. Could be nothing. But I just want to know.

In addition to this, about 2 months ago she started having issues with stiff and painful joints. It started in her knees and it was pretty bad when she would first wake up. She could barely bend her knees as she was walking. By mid day it seemed a bit better and it didn't bother her EVERY day. But it did bother her most days. Then it went to her ankles. Then to her shoulders (mainly her right one) So I mentioned this to her Ped at her next visit (about 6 weeks after it started) and she sent her to a Rheumatologist. Her main concern was Rheumatic Fever because her ASO Titers were very elevated (meaning Strep was in her system even though 6 different swabs for Strep in the past 2 months had been negative) She also put her on 30 days of Amoxicillin to make sure the Strep was taken care of and Vicodin for the pain she was having in her knees, ankles and shoulders. (It was getting to the point where she'd wake up in tears every morning because it hurt so bad to move)

So, a week later we had an appointment with the Rhuematologist.  She ruled out Rheumatic Fever (after more testing) and we are now down to 2 possible issues. One being JRA and the other being Juvenile Fibromyalgia. She is showing all the signs of JRA except she doesn't seem to have any inflammation (by what the Rheumatologist can feel anyway) so she is still hesitant to say for sure. She said it could be in the very beginning stages of JRA. (For the record, I had JRA as a child but I hear it's not hereditary so I guess that means nothing.)

Another issue we have is the treatment. The Rheumatologist usually prescribes Naproxen. An anti-inflammatory. But she can't have it because of her HHT. Being on NSAID's or Anticoagulants with HHT can cause more bleeding. So, the Rheumatologist talked to the Hematologist to see what she'd say. Of course the Hematologist wanted to see Bee first for an appointment. So we went. To me it was a waste of time because I knew what the answer would be. And I was right. The Hematologist said Naproxen was not a possible treatment for her because of the complications. (I don't want to say I told you so, but...)

So, we went back to the Rheumatolgist on Thursday and she is putting her on a trial of Celebrex (which the Hematologist suggested) but Celebrex still has a bit of blood thinning agents in it so I was told to watch for more bleeding than usual and if it happens, then I need to stop it immediately. (That doesn't make me feel better) I was supposed to start it yesterday, but to be honest, I was scared to. So I still haven't yet. Today, I will. But I'll be watching like a hawk.

So, for now, we are to do Flexeril (a muscle relaxer), Celebrex, warm baths, massage, swimming helps and the Rheumatologist also put her in Physical therapy 2 times a week. She also had more lab work on Thursday (9 vials of blood) to see if we can get more answers. (Not sure what all she tested but I know she did a CBC, Sed Rate and ANA test for sure)

The Rheumatogist also called the Ped to see if Bee can be taken off the Amox. It's not helping anything and it's also bothering her tummy. She barely eats anything anymore and has lost a total of 3 pounds in the past month. Not a lot for an adult, but it is an issue for a child.


So that's where we are now. Most of the time my 11 year old walks around like a 90 year old and it breaks my heart. I just want to know exactly what this is so we can figure out how to help her. I don't want her on all these meds. One that makes her sleep until noon when she takes it the night before (Flexeril) and one that can potentially cause more issues with her other disease.  This has been very hard for her and very stressful for me.

And to add to all of this...she gets her Pulse Ox checked at every appointment just to keep an eye on her PAVM's. They did it routinely at all of these specialist appointments in the last couple of weeks. In the past year it's been hovering between 97-98 which is great. But at every one of these visits it was hovering between 94-95 which shows that it's going down. It's been 3 years since her last Embolization and I know there are more small PAVM's in there that they couldn't get to last time. So now that she's growing, they may be too. So after all of this other stuff is taken care of (as best we can) I'll make an appointment with the Cardiologist to see what she says. (The Dr from the HHT Center in San Diego says to be concerned with anything below a 94. So I am now getting concerned but I'm going to wait and see a while) It's not an emergency right now. But it is something to keep an eye on (as always)

So, that's where we are now. Lots of appointments, tests, new meds and more worry. But, my girl is amazing and she can handle anything that comes her way.

I'll update more on this when I know what is going on. Hopefully soon! In the meantime, prayers are appreciated! Thanks for stopping by. :)