Update on pump progress, Bekah's dental procedure and Megan

It looks like we should hear back in about a week about our appeal to our insurance company for a pump. I can understand why they denied it in the first place. 6 months minimum of MDI is a good standard to have. I told them about the school situation and had the CDEs from our Endo's office write a letter. I have been in contact with a great rep at the Animas company who has been wonderfully supportive and is fighting for us. I know we'll have that pink pump, it's just a matter of when. I am really hoping to get through the learning curve of pumping prior to sending Bekah to school.

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When I took the kids in for their 6 month dental check up in June, the dentist noticed some cavities on Bekah's teeth. Her teeth had been perfect in December. Meri pointed out that being in such severe DKA at her dx in March, she would have been breathing sugar so that could have attributed to the decline in her oral health. Whatever the reason the cavities were there and she was so timid (I think due to the trauma in March from the hospital etc at dx) that the dentist thought it would be best to do the work in her mouth with her under sedation.

Today was the day we went in for the procedure. I was very nervous after almost losing her in March . I had talked with our CDE and had a well child check done to make sure to minimize any risk that we could be taking by putting her under a general anesthesia. We did a BG check at 3 AM again at 6 AM and then at 9:30ish right before the anesthesiologist gave her a shot. Her BG was 167 at 3, 176 at 6 and then 205 before the procedure and 215 after. I was actually happy with those numbers. They could have been better but given the stress she was under, I'll take it! The anesthesiologist talked with me for a minute, listened to Bekahs lungs and the gave her a shot to relax her. I carried her back to the chair, kissed her on the head and went back out to the waiting room. I had brought a book with me. I haven't had the time to read for pleasure in quite sometime so I thought I would take advantage of this time to escape to another world with my favorite author, Karen Kingsbury. I chose "Halfway to Forever". The book opens with a woman standing in a cemetery at her daughter's grave. Could I have chosen a worse book for the moment?!! I fought back tears as I read and tried to distract myself from the circumstances surrounding me and tried to focus on the characters. (it wasn't working very well and I made a mental note to skim the first chapter of a book before I decide to dive in at what could be not the most optimal time for said book)

The procedure took about an hour and then they let me come back as Bekah was waking up. I had never seen anyone come out of anesthesia before and they told me it was normal but it still freaked me out a bit to see my daughter shivering and coughing with a weird snoring sound coming from her. It looked like a seizure to me. For a mom who knows that her daughter could have a seizure as a complication of her medical condition, this was particularly scary to watch. I took a deep breath and sat and held her hand and rubbed her leg until she woke up. The anesthesiologist warned me that she would probably wake up very grumpy. My sweet girl woke up with a smile on her face.

After about a half of an hour, they let me take her home. I carried her to the car and put her in her seat, buckled her up and arrived home in less than 10 minutes. She was happy to be home but did cry a little at the numb feeling she had around her mouth. That really bothered her. (who doesn't get bothered by that icky numb face) She slept a lot today. One of the side effects of general anesthesia is nausea and vomiting. I don't know about the rest of you but vomiting with D is one of my greatest fears. I proactively called our pediatrician and got a prescription for an anti-nausea medication (Zofran). I didn't have to use it but it did put my mind at ease to have it on hand just in case.

Poor Bekah was a climbing structure for David all day. He knew she wasn't feeling well so he wanted to snuggle her. At 17 months old he doesn't know his own strength nor does he understand that laying on someones face is not snuggling on their part. She was so patient with him as he squeezed and smothered her with his toddler love. She is such a great big sister!

Bekah didn't eat much today but, I did get her to drink some juice boxes and some yogurt smoothies. Her BG stayed in the 170-200 range most of the day. I bolused after meals because I didn't have a clue how much she would eat and I didn't want to try to force down extra juice to make up for the uneaten carbs. Tomorrow we will go back to pre meal bolusing.

Bekah ended up needing 8 crowns plus sealants. I'm still feeling guilty for letting this happen although, I did get the hygienist to let me in on the fact that both of her kids had 8 crowns as well. I didn't feel like the worlds worst mom after that. I keep tooth brushes everywhere now. I have 2 for each kid by the candy jar that we use for low blood sugar. I found a cute tooth brush timer app for my smart phone that we use every night too. Hopefully all we will need in the future is cleaning and checkups at the dentist's office.

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Megan did her collection for the GI doc and I got a call back that all was negative. I guess that is a good thing. I want a correct dx if there is something going on in her body that we need to know about. I did ask our pediatrician what I should expect at the GI doc when she called with the results of the stool tests. She told me that the GI doc would maybe redo the blood work once more and then maybe do a liver biopsy. Not sure really what to expect so I am trying to keep myself from googling or thinking about what could be and trust God that He knows what's going on and will grant wisdom to this GI doc.

On a positive note Megan and Bekah get to go to camp together on Sunday. I will fill in the details in another post because this one is long enough.

Party Time

Sunday was Bekah's birthday. I wanted to do a special party for her. Having a summer birthday makes it hard to invite school friends and people go on vacation etc. Being the third child, we have not always put huge effort in to a party for her. Megan also has a July birthday so two birthdays in one month gets a little spendy.

Build-a-Bear workshop is fairly inexpensive and has the added bonus of not allowing food. (I thought if it as a bonus anyway) Each child goes home with a bear so there is no need for treat bags either. So that is where we went.

After the party we had a yummy dinner of Bekah's favorites that we shared with some of our best friends. Mac-n-cheese, corn and watermelon (my girl loves her carbs). We followed it up with chocolate cake and vanilla ice cream.

You are probably wondering what her numbers looked like esp after such a carb heavy meal. Well it wasn't pretty. I rounded way down when I gave her dinner bolus and she still hit 51 an hour or so after we finished eating. We corrected and gave her a 15ish carb snack with protein. At the 3 AM check she was at 377! Talk about a roller coaster!

Here are a few pics from the day.

Today...

Today, I celebrate life! Today, I celebrate that Bekah was born to our family 7 years ago. That God chose us to bless with this precious life. Today is different from her other birthdays, for today, I will celebrate in a way I have never celebrated before. Since we celebrated six years with our sweet girl, a year ago, there has been a change. I have become more keenly aware of how fragile life is. Today, I celebrate that 140 days ago, God decided again to let this precious little girl grow up as a part of our family. I love you to the moon and back a million, trillion times my sweet Bekah! I hope you have the best birthday ever and I get to celebrate many, many more with you!

Then...




...and now

Sucker punch

I just got the wind knocked out of me! I had heard from the Animas rep that our insurance company would cover the Ping 100%. I was so excited!! With the crazy week I have had it was my silver lining. I was just waiting for that beautiful pink pump to come in the mail. I just got a call from the third party pharmacy that we have to go through that it was denied. DENIED! What about school?? The pump was my answer to their skin piercing issues. I had a melt down on the phone with the pharm. Then called the insurance company in tears. I filed an appeal. Now I wait...

Here is a note I sent to my prayer warrior friends. I know many if you are the praying type so I petition you as well.

Thank-you for your continued prayers for Bekah. We are facing quite a conundrum as school approaches. Bekah will be at school 6 hrs a day in the fall and will need at least one if not 2 insulin injections during that time. She is getting good at giving her self shots but not so good that I am comfortable with her doing all of them at school with out proper supervision. She is only (almost) 7! There is only a nurse at the school one day a week to help her. Otherwise she is on her own unless I am there everyday and then there is the task of keeping a very busy one year old safely occupied as I administer the injections. We thought the answer to this was an insulin pump. I just heard back from our insurance company that the pump was denied for Bekah. I am appealing this decision. I also know when I am at the end of me and don't have the answers that Papa God does. I am not asking you to pray that we get approved but for wisdom and direction. Is there something here I am not seeing?? His ways are higher than my ways and His thoughts higher than mine.

My prayer is, "Show me Lord, Your will, and let it be done to the glory and honor of Your name!"

Thanks so much!

Blessings,

Heidi =)

A day at the coast

Good morning friends! Thank you so much for all of your kind, sweet words on my blog yesterday. I appreciate your support and prayers so much. Life with a busy family of 6 has it's ups and downs and then you throw in D and some days it all gets overwhelming. I realized this morning that I had pictures on my camera that I had not even uploaded to my computer, much less blogged about.

One of the nice things about where we live is depending on your mood, you are less than a two hour drive from just about everything. Skiing in the mountains is just a hop, skip and a jump in one direction and spending a day at the ocean is a small jaunt in another. We decided on a whim one Sunday a couple of weeks ago to pack up and go to the beach.

The place we chose was Cannon Beach. It is the place where the old movie "Goonies" was filmed. We started the day out early so we could try to catch some tide pools. We did find some pools and a few crabs but not much else of interest. We think there was a dead sealion up a ways from where we were but I would not let the kids get close enough to see if he was just napping.

The famous Haystack Rock as seen in "Goonies"

Once we could pry David from the sand and surf, we moved on to a few other activities. Most little boys dream come true is sand and water in the same place where Mom says "go for it" and you can get dirty to your hearts content. He didn't want to leave and was not understanding that we would be coming back. We hit the promenade and did some geocaching along the way. We window shopped and even let the kids spend a couple of bucks in the candy store and toy store.

After all of the activity and the fact that it was snack time I figured that letting Bekah have a 20ish carb candy wouldn't do any harm. Her lunch BG was 290 oops, guess I was wrong. We corrected and ate the picnic lunch I had packed. Then it was back down to the beach for some more splash time.

If you have never been to the Oregon coast I should tell you that the water is C-O-L-D! I'm even shivering as I type this thinking about it. The kids played and played. At one point I began to get concerned that we should check Bekah's BG. She was at 63. (where is that candy from the candy store when I need it). She actually did have some left and was happy to partake in some sugary goodness to bring her back up in range.

We finished out the day by eating a yummy dinner at one of the local diners. It was one we had not tried before. I had a yummy salad and Josh had fish that he loved, but Jason and Meg said the burger was just ok. David enjoyed his "chicken-chicken" and "fre-fries". (I love hearing kids learn to talk).

Here are a few of the pictures that I took. I was so busy just taking in the day that I almost forgot to whip out the camera.

the kids playing in the water (brrr)

random pics (Josh is under the towel taking a nap and David had to get a snuggle in)

Beyond exhausted...

I don't remember ever feeling this emotionally done. It has been an excruciating week. I don't even know where to begin. The one thing that has been ok has been D. Bekah's numbers (knock on wood) have been doing well. Waking up at 115ish and hanging out there most of the day and peaking at 160ish at 3AM. Pretty consistent. Now that I have it down on paper it is bound to change.

David has an eye infection that started in his right eye. I got him in to the doc as soon as I knew it was bad. The ointment they gave me didn't work and then both eyes got infected and goopy gross. So now he is on drops and I think the green goo will finally be gone today sometime. He has been cranky with a capital C.

Megan has done her collection for the GI doc and we are waiting for her appt in early Aug. Meanwhile I am trying to keep my thoughts inline and not go to the unthinkable unknown places.

I have an angry case of eczema that goes from my knees to my shoulders and every where in between. Although we have great insurance for the kids we have none for us. Cortisone cream is not touching it. I have been on a dairy free diet for over a year because we discovered David is allergic to cows milk even through my milk. I just added a gluten free component that doesn't seem to be doing anything for the eczema. I was hoping it was a gluten rash and I could find the cure with out a bunch of tests. I guess my next step is to call the doc and fork over the money to get it figured out. (still will most likely be cheaper than private medical insurance)

My husband gets his last teaching check next week. He is not looking for a job but instead has an idea for networking small businesses. I'm sure that God will provide but I have to be honest and say I am too tired to be as supportive as I know he needs me to be. I'm not un-supportive but my heart is not in it. I have so much else to worry about that I am just a long for the ride. My husband has a reckless faith which is admirable and many days I enjoy the adventure but right now I long for some semblance of stability. Most of our married life we have lived on daily faith and seen all but litteral manna provided for us. I have story after story of God's faithfulness just when we didn't know where else to turn.

Here is one for you. Just this week, the kids were playing outside and one of them noticed that the tags on our car were expired. My husband went and looked and sure enough they were expired but not just recent. They expired in March. Just about the time our identity was stolen and Bekah was dx with T1. It was a miracle that we hadn't been pulled over. We only had $18 in the bank so there was no way we could afford to get the tags replaced. A client that we had all but given up on (my husband has a web hosting business) called that day and asked if we would come pick up a check. It paid for the tags, gas and a little bit of food. I was never once worried because I am my Daddy God's princess and He ALWAYS takes care of me.

My teenage son has been the most exhausting. I need to respect his privacy and not go in to detail about what has been going on. I have been clinging to God for wisdom and strength through this. (as tears well up in my eyes)

Today I am beyond exhausted...

D meet up

There are a few of us D-moms that have gotten together a couple times since Bekah was dx with T1. My friend, Bonnie, has a daughter who was dx with T1 5 years ago so they have met a few people over the years that have D in common. She has graciously opened up her home to us once a month or so. It has been awesome meeting these folks! She met up with another gal who does the same thing with a different group. They decided it would be cool if we all met at a park this summer. We met last week. I haven't blogged about it because I have been processing the whole thing. It was good, don't get me wrong. I always love meeting people that "get it".

It was a very hot day. Here in the PNW, we have had 60 degree and raining weather for weeks and weeks and then bam 90. I'm not complaining, but it would have been nice to get a warm up so we could acclimate. Seriously on the 4th of July I was wearing two sweatshirts and less than a week later roasting in 90 degree heat. I was not going to let the heat stop me from this outing and opportunity to meet some more people that understand my new world.

Our group was on the ground on blankets and their group was under the covered area just a little to our left. That in itself was a bit awkward because it was like them and us. I skipped over anyway and introduced myself. They were all very nice ladies with absolutely adorable children.

At one point my situation with the school came up as I was talking to one of the moms. They are all from a different school district than the one we are in. In their district, they have procedure nurses that travel and take care of their kids. Our district doesn't have that in place and in fact the nurse is only there 1 day a week.

I went back to "our" group to say some hellos and squeeze some necks of people I hadn't had a chance to touch base with. When I came back over to meet a couple of new ladies that had joined their group, I was bombarded. I know they meant well. I'm sure being on sensory over load with the heat was a big part of why I felt overwhelmed. I was being thrown "you need to threaten to sue", "you need to call the local news station", "you need to, you need to , you need to". I wanted to just melt into a puddle and cry.

I know that they had the best intentions and have been dealing with ignorance from people and having to fight for their kids for years. I get that. I have a fierce mama bear inside of me too and can go from 0 to bitch in less than 60 seconds if necessary. Maybe I am naive but I really think that I can fight this with out having to fight so to speak. I believe we can come up with a win-win situation. I will be contacting these other moms though if I need to get mean and nasty.

I am a little backwards from the rest of society. I believe that respect is not something that is earned. I believe that all people deserve honor because they are God's creation. When He was done creating them He was happy with the result. He loves them with an everlasting love and sent His son for them. So before I go putting on my bitch hat and making a spectacle of the school district I want to try to handle this with grace and honor. (I have contacted the ADA and Bekah will be on a pump so the skin piercing will not be an issue) I also want to just enjoy my summer with out worrying about the school and what the best course of action for Bekah's education is.

All in all our experience at the park was a nice time. Here is a picture of the kids and some of the moms. I think we could be great friends if we have the opportunity to meet on a regular basis. (the cutey in the blue dress is Bekah and to her right is Bonnie's daughter who has been an amazing strength for Bekah)