Since Bekah's diagnosis of T1D I have had countless people comment on what a strong person I am or how much strength I have. I will be completely honest with you. I am not a strong person and really I have nothing. I do know that when we come to the end of ourselves that there is One greater who will pick us up and be strong for us. I came to the end of myself prior to March 8th. It was really over the weekend before when I wasn't really sure what was going on with Bekah but I knew something was wrong that I became a puddle. My Heavenly Daddy came in and picked me up and said "it's ok I've got this one, you just let me carry you through this". The lyrics to the song "Let The Waters Rise" by Mikeschair really say it all. It may sound a bit dramatic but really this is how I felt during the first few days, even weeks as we tried to find out what this new diagnosis meant and what went with it. I still have days where this is the cry of my heart.
Don't know where to begin
Its like my world's caving in
And I try but I can't control my fear
Where do I go from here?
sometimes its so hard to pray
When You feel so far away
But I am willing to go
Where you want me to
God, I trust You
There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If You want them to
I will follow You
I will follow You
I will follow You
I will swim in the deep
'Cuz You'll be next to me
You're in the eye of the storm
And the calm of the sea
You'll never out of reach
God, You know where I've been
You were there with me then
You were faithful before
You'll be faithful again
I'm holding Your hand
There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If You want them to
I will follow You
I will follow You
I will follow You
God Your love is enough
You will pull me through
I'm holding onto You
God Your love is enough
I will follow You
I will follow you
There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If You want them to
I will follow You
I will follow You
I will follow You
If you want to hear the song here is the link to the video on youtube
Friday, April 30, 2010
Wednesday, April 28, 2010
A1C
What exactly is an A1C you might ask? Definitely not a term I was familiar with prior to Bekah's diagnosis. I knew it was a blood test and they had done one in the hospital but I had never gotten the results from it. As I began meeting other parents of T1Ds and researching information on T1D it seemed to be a buzz word or term. A vocabulary word that would quickly become a part of our new normal. Here is what I found on the Mayo Clinic Web site:
" The A1C test is a common blood test used to diagnose type 1 and type 2 diabetes and to later gauge how well you're managing your diabetes. The A1C test also goes by many other names, including glycated hemoglobin, glycosylated hemoglobin, hemoglobin A1C and HbA1c.
Unlike finger sticks you can do at home, which measure your blood sugar level at a given time, the A1C test reflects your average blood sugar level for the past two to three months.
Specifically, the A1C test measures what percentage of your hemoglobin — a protein in red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control. And if you have previously diagnosed diabetes, the higher the A1C level, the higher your risk of diabetes complications."
Today was the day for Bekah's first A1C after the hospital. We didn't expect that it would be done today. We had an education meeting so we figured we would just be meeting with the educators. The nurse came to the waiting room to get Bekah and I and she said, "I just need to get a quick A1C" I was excited because it would tell me really how well we were managing Bekah's diabetes. Bekah was not at all excited. Her whole body tensed up as tears welled up in her eyes. She remembered hearing the term in the hospital and I'm sure it brought back scary memories. After some coaxing I got her to wash her hands and the nurse showed us that it was really no different than the finger pricks we do at home. I think Bekah was relieved. I'm pretty sure she thought it was going to be a regular blood draw (a piece of cake when you have to have 4 shots a day but Bekah doesn't like new experiences and the IV at the hospital hurt bad when they placed it and that was the closes thing she had known to regular blood draw). Bekah even pricked her finger with "Hokey Pokey" all by her self and squeezed out just enough blood for the special test strip. The nurse placed it in the machine and 6 minutes later we had the results. 8.1! Wow! I was excited. It's not perfect and for Bekah we are hoping for closer to 6 but for just being diagnosed 7 weeks ago, I'll take it. When the educator gave us the number, I asked about the number when Bekah was diagnosed. She looked in her chart and said "wow 15.3". 15.3 was one sick little girl. I am so thankful for God's grace to help us mange T1D. Medical technology has come so far,it helps tremendously to have all of the tools that we do. I won't stop praying for a cure but until then we'll work the D as best we can and hope for more great A1C numbers.
" The A1C test is a common blood test used to diagnose type 1 and type 2 diabetes and to later gauge how well you're managing your diabetes. The A1C test also goes by many other names, including glycated hemoglobin, glycosylated hemoglobin, hemoglobin A1C and HbA1c.
Unlike finger sticks you can do at home, which measure your blood sugar level at a given time, the A1C test reflects your average blood sugar level for the past two to three months.
Specifically, the A1C test measures what percentage of your hemoglobin — a protein in red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control. And if you have previously diagnosed diabetes, the higher the A1C level, the higher your risk of diabetes complications."
Today was the day for Bekah's first A1C after the hospital. We didn't expect that it would be done today. We had an education meeting so we figured we would just be meeting with the educators. The nurse came to the waiting room to get Bekah and I and she said, "I just need to get a quick A1C" I was excited because it would tell me really how well we were managing Bekah's diabetes. Bekah was not at all excited. Her whole body tensed up as tears welled up in her eyes. She remembered hearing the term in the hospital and I'm sure it brought back scary memories. After some coaxing I got her to wash her hands and the nurse showed us that it was really no different than the finger pricks we do at home. I think Bekah was relieved. I'm pretty sure she thought it was going to be a regular blood draw (a piece of cake when you have to have 4 shots a day but Bekah doesn't like new experiences and the IV at the hospital hurt bad when they placed it and that was the closes thing she had known to regular blood draw). Bekah even pricked her finger with "Hokey Pokey" all by her self and squeezed out just enough blood for the special test strip. The nurse placed it in the machine and 6 minutes later we had the results. 8.1! Wow! I was excited. It's not perfect and for Bekah we are hoping for closer to 6 but for just being diagnosed 7 weeks ago, I'll take it. When the educator gave us the number, I asked about the number when Bekah was diagnosed. She looked in her chart and said "wow 15.3". 15.3 was one sick little girl. I am so thankful for God's grace to help us mange T1D. Medical technology has come so far,it helps tremendously to have all of the tools that we do. I won't stop praying for a cure but until then we'll work the D as best we can and hope for more great A1C numbers.
Sunday, April 25, 2010
Our new normal... (in photos)
The following are photos of things that have become a part of our life on a daily basis. Many of these thing we had never seen or thought much about prior to Bekah's diagnosis of T1D. There are lots of photos so I apologize if you have a slow connection.
The calculator ap on my phone. I love it! It saves my bacon many times a day because math and I don't get along all that well. =)
My handy dandy measuring devices (not sure where I'd be with out them)
A new favorite household beverage (0 carbs so Bekah can have it any time)
Glucogon (an injection that we have to give Bekah if she is unresponsive. It tells the liver to dump all of the sugars in to her system to quickly bring her BG level back from critical levels. Our hope is to never have to use it but for safety sake she has to keep it with her at all times)
Our favorite snack (it has 17g carb, 3g fiber, 2g protein, and 7g fat) a good combo to keep blood sugar even
Fasting acting cabs for low BG levels
This is Bekah's diabetes bag. It has everything she needs on a regular basis through out the day. (testing stuff, fast acting carbs, protein/carb snacks, glucogon and extra of everything)
Prize box (Bekah gets a prize for being extra brave and doing a poke herself. Mostly it's just for BG checks but will come in handy for other stuff in the future. I like to keep things positive.) It has pencils, pens, stamps, stickers, sugar free gum, jelly bracelets, tattoos, erasers, little note pads etc.
Sticker sheets (she gets to put a sticker on for each poke)
The log book where I record BG levels and carbs etc
This is a book that I use to look up the carbs in foods with no label (ie. strawberries or pasta) I also have an ap on my phone that I use quite often.
Band-aide box full of fun band-aides.
Night time insulin to give a base line. From my understanding, it works with the sugars produced by the liver.
Sharps container. We fill up about one a month.
These are all of the thing we need to do a BG check. Lancing device, strips, and meter
A finger prick
Hokey Pokey
Lancets to go in the lancing device
syringes
needles for the insulin pen
Insulin pen
Used test strips. We go through six or so a day.
The calculator ap on my phone. I love it! It saves my bacon many times a day because math and I don't get along all that well. =)
My handy dandy measuring devices (not sure where I'd be with out them)
A new favorite household beverage (0 carbs so Bekah can have it any time)
Glucogon (an injection that we have to give Bekah if she is unresponsive. It tells the liver to dump all of the sugars in to her system to quickly bring her BG level back from critical levels. Our hope is to never have to use it but for safety sake she has to keep it with her at all times)
Our favorite snack (it has 17g carb, 3g fiber, 2g protein, and 7g fat) a good combo to keep blood sugar even
Fasting acting cabs for low BG levels
This is Bekah's diabetes bag. It has everything she needs on a regular basis through out the day. (testing stuff, fast acting carbs, protein/carb snacks, glucogon and extra of everything)
Prize box (Bekah gets a prize for being extra brave and doing a poke herself. Mostly it's just for BG checks but will come in handy for other stuff in the future. I like to keep things positive.) It has pencils, pens, stamps, stickers, sugar free gum, jelly bracelets, tattoos, erasers, little note pads etc.
Sticker sheets (she gets to put a sticker on for each poke)
The log book where I record BG levels and carbs etc
This is a book that I use to look up the carbs in foods with no label (ie. strawberries or pasta) I also have an ap on my phone that I use quite often.
Band-aide box full of fun band-aides.
Night time insulin to give a base line. From my understanding, it works with the sugars produced by the liver.
Sharps container. We fill up about one a month.
These are all of the thing we need to do a BG check. Lancing device, strips, and meter
A finger prick
Hokey Pokey
Lancets to go in the lancing device
syringes
needles for the insulin pen
Insulin pen
Used test strips. We go through six or so a day.
Our new normal...
In this blog entry I will take you through a day in the life of Bekah (a six year old little girl with T1D) from her mom's perspective. Bekah was diagnosed with T1D on March 8, 2010. (look in the blog archive for her diagnosis story) Daily at 9:00ish AM Bekah gets up. She usually comes down stairs and gives me a hug and snuggles me for a few minutes while I sip my coffee. "Ok time to check you blood sugar." We go upstairs and retrieve all of the contents of her diabetes bag that lay strewn across my dresser from the night time checks and bring them down to the kitchen table to begin our morning regimen. She takes her lancing device which she affectionately calls "Hokey Pokey" and pricks her finger then squeezes to get a small puddle of blood. I put a strip in the glucometer and put it up to the blood. It beeps and Bekah grabs a tissue to blot the rest of the blood while we wait for the number appear. If the number is in the range (80-180) we don't need to do anything extra but if it's lower than 80 she drinks 4oz of juice or eats 4 Starburst candies or 15 jelly beans and we test again in 15 min. If it's higher than 200 I add and extra unit to the number of units of insulin I give her that morning with her breakfast. Bekah then picks out her breakfast. I measure and add up the number of grams of carbohydrate and do the math to figure out how much insulin to give her. (the ratio is constantly changing because her body is changing how it processes the sugar) Right now we are on a 1:15 ratio for breakfast and lunch and a 1:20 for dinner. Her breakfast usually consists of fruit and cereal. I measure the cereal (1 cup and 1/4 of rice crisps) and 8 oz of milk. That is usually 45 g of carbs and then if she has a cutie orange that is 8 or grapes are 1 carb each. For a 60g carb breakfast she gets 4 units of Novalog. I set the pen and give the injection. Sometimes she wants to even put the needle on the pen herself and other times she doesn't want much to do with it. It is so strange to think that one day she will be giving her self shots. After she has been given her insulin, Bekah can eat her breakfast. After breakfast we find a 15 carb snack to pack for school and walk to the bus stop.
At the bus stop I give her a hug and tell her to have a great day and as she is running to get on the bus I add "listen to your body". While she is at school my cell phone stays on my person. There is only a nurse at Bekah's school one day a week, so my phone is my life line to her if her BG gets weird. So far she has had no problems. I hope it stays that way! At 3:00 David and I go back to get Bekah at the bus stop. I always make a big sigh of relief as I watch her de-board the bus. We talk about her day, the letter of the week and who she played with at recess as we walk home. Once home, we unpack her back pack, taking care of papers and get her diabetes bag and put it on the table. She likes to pick out her lunch before we check her BG. After her lunch is picked out and placed nicely on a plate in front of her, we begin the same routine as we did for breakfast. She gets out "Hokey Pokey" and does the test mostly on her own while I do the math and get the pen ready with her bolus. She eats her lunch and goes out to play while I get dinner started.
Dinner is around 6:30. Bekah comes in from playing, washes her hands and goes right to doing a BG check. I get her plate ready, count carbs and get the pen ready. Usually at dinner she wants Daddy to do the injection so she climbs up on his lap and he gives her the insulin. (One thing we do in our home is we don't use the words "shot" or "injection" we call it "giving" or "getting" insulin just like any other medicine we just don't put an emphasis on the fact that this medicine is given through a shot that hurts) During dinner Bekah will remind me that she gets so many stickers (we do a sticker for each poke) and so many prizes (she gets a prize for each time she is extra brave and gives herself a poke, so far it's just for BG checks but eventually for insulin injections). After dinner we get out the sticker charts and the prize box.
We wait at least an hour after her dinner insulin to give her a bath. Getting ready for bed includes a BG check yet again, then a 15 carb snack. I have found Ritz Crackerfuls to be my favorite bed time snack. Bekah loves them and they have a really good protein, fat, carb, fiber content to keep her BG at a nice even place. (that's the theory anyway). Before bed she gets her Lantus. I draw that up in a syringe and she picks where she wants the shot. I giver her the shot, kiss her on the head and tell her that she is the bravest little girl in the world, then it's off to bed. At night we check Bekah's BG at least once at 2AM and sometimes a second time at 6 AM. Then the day begins again...
Some things that are part of our "new normal" are Bekah's Diabetes bag which includes, glucometer, test strips, lancing device, extra pen needles, extra lancets, extra syringes, glucogon (an injection for emergencies when she becomes unresponsive, we are hoping to never have to use it but she has to keep it with her), 15 carb snacks, juice boxes and other fast acting carbs and her insulin if we are going anywhere for a long period of time.
The photo at the top is of my counter top. I keep it organized to the T. I even threaten "off with their head" to anyone who dares to put anything that doesn't belong there or messes it up in any way. =)
I think the next blog will be a photo blog of all of the things that are part of our "new normal"
Saturday, April 24, 2010
Out of crisis and on to the next few days...
Our first few days are kind of a blur but I will try to recall the important stuff. If you are facing a new on set of type one in your family, this stuff does become routine and you do adjust to your new life. You have to look at it as a new normal though and not try to look back at what life used to be like. That is how I got through the first week and still get through. I know that our life will never go back to the normal we knew before the diagnosis of T1D. We are making the best of our new normal that we can.
Tuesday morning Bekah was moved in to a room on the regular pediatric floor. They had brought her BG level down from 856 when we were first admitted, to around 300 (a normal healthy BG is around 100). We had some fairly good nurses and overall felt like we were well taken care of. We were given two options for our insulin regimen. The one we chose is Novalog and Lantus. Novalog is a fast acting insulin to be given with meals and Lantus is given once a day as a base line working with the sugars produced by the liver and stays in the system for approximately 24 hrs. That is 4 shots a day. The other option was less shots but also less flexibility as to when and amounts that Bekah could eat. I wanted to make sure Bekah didn't feel a total loss of control in all of this so more shots seemed to be a better option for us. We can switch at any time so I figured it's best to start with the most shots and switch if the shots are a big problem. So far it seems to be a good option and allows Bekah the control of eating when she wants and pretty much what ever she wants. We have a goal of about 60 carbs (grams of carbohydrate) per meal and 2 snacks of 15 carbs each, but she has a lot of flexibility with in those goals.
Tuesday afternoon Jason began to feel dizzy. I thought it was from lack of sleep and stress. It probably was but instead of getting better he continued to get worse until my father-in-law came and wheeled him out in a wheel chair and took him to the clinic on Wed morning. He was diagnosed with vertigo. He was really sick. I never knew someone could get vertigo that bad. I have had small bouts with it before a migraine but never as bad as he had it. He ended up being sick for over a week. Wednesday also, our 14 year old son began having chest pains. Again I'm sure it was stress (it tuned out to be stomach problems and as I am writing this, almost 8 weeks later, he is doing much better) Monday we had been notified that our bank acct number had been stolen and someone had charged a bunch of stuff totaling over $900. We had the added challenge of trying to figure out how to eat at the hospital with no money. I couldn't worry about all that was going on around me I just had to look to Christ as my rock. I kept singing "On Christ the solid rock I stand, all other ground is sinking sand..." (mostly in my head but at times would blurt it out loud).
My sisters and my mom were my unsung heroes the whole week. My mom took care of Josh and Megan, making sure they were at school on time and had all that they needed. She knew that Josh didn't need to go to the ER when he had chest pains, that he just needed to rest so she made the necessary arrangements for him. My sister, Tammi, was able to drop everything and come to Vancouver from Puyallup. She took care of David. My job had to be to concentrate on Bekah's needs because Jason was sick so David had to settle for second best. Tammi makes a pretty awesome second best! My other sister, Polli had to work so she couldn't come. She is a nurse and knew exactly what we needed. She sent a gift to Bekah and then called the hospital and paid for a food card for us. I am so blessed to have such an awesome supportive family.
Education, education, education....that was what was on the agenda. I needed to know how to manage Bekah's diabetes and the educators needed to know I knew what I was doing. I can't say enough about the wonderful diabetes staff at Emanuel. We have a Pediatric Endocrinologist along with a myriad of educators, many of whom are people with T1D themselves. When I told Dr. Hunter of all that was happening with my family and how I felt like I needed to get home ASAP she was awesome to schedule a ton of stuff for us in one day and released Bekah as soon as we got through it all. I dove in with both feet and became a sponge, soaking in as much knowledge as I could cram in my head. I couldn't believe I was giving shots with a huge fear of needles. Again I had to rely on Christ's strength to get me through because I had nothing.
During the day while I was learning, my sister brought my niece up to visit with Bekah. Makaila is not just Bekah's favorite cousin, she is her best friend. I watched some of the sweetest interactions in between stuffing knowledge in my head. Makaila was Bekah's silent (well not so silent if you know Mak) strength. She let her squeeze her hand until it practically turned blue every time Bekah had to get a poke. She chimed in to our "peanut butter and jelly sandwiches" every time too. The girls played DS. Bekah got one from Jason's mom on Tuesday morning. It was supposed to be her birthday gift but Grandma decided that she needed it early. (4 months early) They colored and played Bingo. They had a great time even though they were confined to the walls of a hospital room.
Wednesday night we got home around 10:00 PM. I made a bed for Bekah on the floor in our room where she was surrounded by all of the stuffies that she got in the hospital. She took a bath and said she felt so much better. It was hard to watch her in the tub because she had sticker marks from all of the tubes that she had hooked up and she still looked like a starving child from a 3rd world country. Her spine was sticking out and her bones in her ribs and hips stuck out too. I was so thankful to have her home in her own tub! We checked her BG level and gave her a snack. I whispered a prayer of thanksgiving and protection for my little girl before we fell asleep. I felt like I was bringing home a new born baby for the first time and had little clue how to care for her.
Thus began our new normal....
Tuesday morning Bekah was moved in to a room on the regular pediatric floor. They had brought her BG level down from 856 when we were first admitted, to around 300 (a normal healthy BG is around 100). We had some fairly good nurses and overall felt like we were well taken care of. We were given two options for our insulin regimen. The one we chose is Novalog and Lantus. Novalog is a fast acting insulin to be given with meals and Lantus is given once a day as a base line working with the sugars produced by the liver and stays in the system for approximately 24 hrs. That is 4 shots a day. The other option was less shots but also less flexibility as to when and amounts that Bekah could eat. I wanted to make sure Bekah didn't feel a total loss of control in all of this so more shots seemed to be a better option for us. We can switch at any time so I figured it's best to start with the most shots and switch if the shots are a big problem. So far it seems to be a good option and allows Bekah the control of eating when she wants and pretty much what ever she wants. We have a goal of about 60 carbs (grams of carbohydrate) per meal and 2 snacks of 15 carbs each, but she has a lot of flexibility with in those goals.
Tuesday afternoon Jason began to feel dizzy. I thought it was from lack of sleep and stress. It probably was but instead of getting better he continued to get worse until my father-in-law came and wheeled him out in a wheel chair and took him to the clinic on Wed morning. He was diagnosed with vertigo. He was really sick. I never knew someone could get vertigo that bad. I have had small bouts with it before a migraine but never as bad as he had it. He ended up being sick for over a week. Wednesday also, our 14 year old son began having chest pains. Again I'm sure it was stress (it tuned out to be stomach problems and as I am writing this, almost 8 weeks later, he is doing much better) Monday we had been notified that our bank acct number had been stolen and someone had charged a bunch of stuff totaling over $900. We had the added challenge of trying to figure out how to eat at the hospital with no money. I couldn't worry about all that was going on around me I just had to look to Christ as my rock. I kept singing "On Christ the solid rock I stand, all other ground is sinking sand..." (mostly in my head but at times would blurt it out loud).
My sisters and my mom were my unsung heroes the whole week. My mom took care of Josh and Megan, making sure they were at school on time and had all that they needed. She knew that Josh didn't need to go to the ER when he had chest pains, that he just needed to rest so she made the necessary arrangements for him. My sister, Tammi, was able to drop everything and come to Vancouver from Puyallup. She took care of David. My job had to be to concentrate on Bekah's needs because Jason was sick so David had to settle for second best. Tammi makes a pretty awesome second best! My other sister, Polli had to work so she couldn't come. She is a nurse and knew exactly what we needed. She sent a gift to Bekah and then called the hospital and paid for a food card for us. I am so blessed to have such an awesome supportive family.
Education, education, education....that was what was on the agenda. I needed to know how to manage Bekah's diabetes and the educators needed to know I knew what I was doing. I can't say enough about the wonderful diabetes staff at Emanuel. We have a Pediatric Endocrinologist along with a myriad of educators, many of whom are people with T1D themselves. When I told Dr. Hunter of all that was happening with my family and how I felt like I needed to get home ASAP she was awesome to schedule a ton of stuff for us in one day and released Bekah as soon as we got through it all. I dove in with both feet and became a sponge, soaking in as much knowledge as I could cram in my head. I couldn't believe I was giving shots with a huge fear of needles. Again I had to rely on Christ's strength to get me through because I had nothing.
During the day while I was learning, my sister brought my niece up to visit with Bekah. Makaila is not just Bekah's favorite cousin, she is her best friend. I watched some of the sweetest interactions in between stuffing knowledge in my head. Makaila was Bekah's silent (well not so silent if you know Mak) strength. She let her squeeze her hand until it practically turned blue every time Bekah had to get a poke. She chimed in to our "peanut butter and jelly sandwiches" every time too. The girls played DS. Bekah got one from Jason's mom on Tuesday morning. It was supposed to be her birthday gift but Grandma decided that she needed it early. (4 months early) They colored and played Bingo. They had a great time even though they were confined to the walls of a hospital room.
Wednesday night we got home around 10:00 PM. I made a bed for Bekah on the floor in our room where she was surrounded by all of the stuffies that she got in the hospital. She took a bath and said she felt so much better. It was hard to watch her in the tub because she had sticker marks from all of the tubes that she had hooked up and she still looked like a starving child from a 3rd world country. Her spine was sticking out and her bones in her ribs and hips stuck out too. I was so thankful to have her home in her own tub! We checked her BG level and gave her a snack. I whispered a prayer of thanksgiving and protection for my little girl before we fell asleep. I felt like I was bringing home a new born baby for the first time and had little clue how to care for her.
Thus began our new normal....
Thursday, April 22, 2010
Bekah's diagnosis with T1D
To begin the story of when Bekah was diagnosed with T1D or Type 1 Diabetes (also known as juvenile diabetes) I will take you back to November. I had to take Bekah in to the doctor because she had not passed the hearing screening at her school. It turned out that she just had a wax build up but I did have the doctor check her weight because she was looking quite thin to me. She had grown an inch and lost 3 pounds. She had just had a nasty bout of the stomach flu so I chalked it up to that. When we went in for the retest on her ears she had gained back two of the three pounds therefor my worry was put to rest.
As 2010 went along I kept noticing that Bekah was getting thin but I figured it was because she was growing and was probably going to have a thin build like my mother-in-law. It was just one of those things that makes you go "hmmm" but not something you rush your child to the doctor over. I had noticed that she was having issues making it to the toilet from time to time before wetting herself, not a lot just a couple of occasions and it wasn't like her but again just something that makes you go "hmm" but nothing to be alarmed over. After all she is a busy kindergarten-er and has a lot on her mind. My older kids would get a little busy at that age and forget to "go" on time. The last week in Feb. Bekah got a little droopy (for lack of a better term). Saturday, 2/27 she went to a birthday party and cried in the car on the way home, and then told me her tummy hurt. I figured she was getting sick. Bekah has had very few cold and viruses in her life. No ear infections or reasons to be on antibiotics. Her symptoms from a virus etc are usually just to lay low for a day or so. I'll find her under a blanket on the couch and she tends to have little appetite but wants to drink. It is almost always recommend to drink lots of fluids when you are sick so I never bat an eye at her wanting to drink a lot. This was the case most of the week. While most times she is back up ready to play with in 24hrs, this time she just didn't seem to bounce out if it. She was getting so skinny and now I began to worry. Was she depressed? What happened at that birthday party? Was she anemic? She is drinking a lot, could it be diabetes?... no we don't have any family history that is silly. What about Leukemia, I can't even go there... I wrote emails to both my cousin and my prayer partner (you know the person you go to at any time knowing they will faithfully pray) I will post them here:
To my prayer partner:
I'm worried about Bekah. She has not been herself. She has grown and gotten thin but she seem unusually skinny to me. Maybe because I have had extra padding is why it seem alarming to me. The thing that worries me the most is she doesn't play. She sleeps and then when she gets up she is usually found lying somewhere curled up in a blanket. 6 yr old little girls are supposed to play!! She seems sad. The only thing that keeps coming to mind is that she was at a birthday party last weekend and she cried in the car on the way home and for a while after we got home. I thought maybe she was getting sick. I asked her what happened at the party and she said nothing. She wouldn't tell me why she was crying. She was playing with my niece at my parents house before the party and then after it seemed her demeanor changed. It could be a coincidence that she was coming down with something and has been fighting it off all week. She doesn't get sick. She usually acts like she has been all week for a day and then she perks up and is better. When you talk to Daddy next will you ask Him about her? Let me know what you hear. I don't know if I need to take her to the doc. How long do I let it go with out doing something??
To my cousin on Sunday 3/7/2010:
Please pray for my daughter, Bekah. I'm not sure what it is yet but something is wrong. She has had no energy for over a week. Doesn't want to play. I keep finding her instead of drawing at the table like she used to always do, curled up under a blanket somewhere half asleep. She has gotten extremely skinny too. Her clothes are hanging off of her. I'm calling the doc in the morning. My mommy instinct feels like it's bad. I'm scared.
Every time I turned around she was sleeping on the couch. On Saturday I had a mini melt down. I cried as I held her on the couch, "I feel like I am losing you" (I had no clue then how close I really was to losing her). I took her to Target and the Dollar store to buy some crafts and activities to try to get her to bounce back or snap out of what ever was going on. She could have been a poster child for depression but in my gut I knew it was something bigger. Monday morning I woke up and immediately called the clinic to get Bekah in to see our doctor. I was disappointed to learn that her regular doctor was rounding at the hospital and not seeing patients that whole week. I decided to wait to see her until the following Monday. I was afraid that another doctor wouldn't take me seriously and Bekah doesn't do well with strangers so a different doctor might not be the best idea for her. As part of my plan to help her snap out if the depression we planned a princess tea party for her and a friend as an early birthday celebration for her friend. Bekah perked up a little for the party and then she feel asleep on the couch. I was planning on her going to school. I'm not sure what I was thinking now that I look back. She was practically in a diabetic coma and I was going to send her to school. All day I had been feeling anxious like Bekah really needed to see a doctor and had even called our pediatrician's medical assistant twice to see if our doc would see her, but this was the last straw. I called and got her in at 3:00 with whomever had room. (I found out later that just as I was making that call our regular doctor was making a plan to get Bekah in with her)
Here is what I posted on Face book:
Taking Bekah to the clinic in a few min. She has not been herself. Extremely tired for over a week. She sleeps a lot and never wants to play. You can see how pale she is from the tea party pics.
7 hours later here is what I posted:
I just want to wake up and the nightmare be over. Bekah is in the PICU at Emmanuel right now. She has been diagnosed with type 1 diabetes. I had to make the difficult decision to come home and leave her with Jason because David can't be there and he needs mommy at night. To top it off someone got a hold of our bank... acct number and stole our money. I'm tired and scared but I know God is bigger than this!
Here is what transpired in those seven hours. The doctor that we saw was very kind. My first and biggest concern was her weight. I asked him to look back in her record to see what she weighed in November. She had lost 12 pounds! From 58 down to 46lbs. I knew it was more than just a growth spurt but had no idea she had lost that much. He then did a urine test and a BG test. The meter said "HI". Having had gestational diabetes, I knew that wasn't good. He told us that Bekah had Diabetes and he sent us to the ER. "Don't go anywhere else just straight across the street," he warned. In the ER we were met by some fairly nice nurses. They had a very hard time placing an IV because Bekah was she dehydrated. The 5th time was the winner! It was so hard to watch as she tried to be good but could not help screaming because the pain was so intense. The last nurse to try looked at her and said "your job is to say peanut butter and jelly sandwiches when I tell you" Just as she went to poke she gave Bekah the signal and together we yelled, " peanut butter and jelly sandwiches!" and the IV was successfully placed. That became our saying each time she had to have a poke etc. We'd say peanut butter and jelly sandwiches together. (we still do some times)
An ambulance came a few hours later and took us to Portland to Emanuel Children's Hospital to the PICU. As Bekah was being wheeled in to the room I met eyes with a woman in the room. It was one of those moments that you know spans both the physical and spiritual realm. It was as if I knew this lady. I knew I had never met her but I "knew" her. She turned out to be Bekah's nurse and the best nurse we had the entire time. I asked her about David being there. (He was just over a year old and still nursing around the clock) For his safety and I totally understand why, he was not allowed. She did let Jason sneak him back for a little while so I could decide what to do. I couldn't leave Bekah's side. I couldn't leave David either. He would be a mess and I knew that Bekah was with Jason and the angel that God had sent to be her nurse. It was one of the most difficult decisions of my life but I knew I needed to go home and regroup. I was a mess. Jason was the stable one who could keep her smiling and all I could do was cry.
It was the longest drive of my life. I kept looking for reasons to turn around or thinking of where we could try to sleep at the hospital. Once I got home I laid David down and began to sob. I felt sorry for myself, Iwent through the huge guilt of "I should have caught this sooner" and "I am her mommy how could I let this happen" etc. I felt sorry for Bekah and the new life she would have to lead. Shots daily seemed so unfair. There were so many fears that I was going to have to face. First of all I have a huge fear of needles, I am a baby when I get shots. Now I was going to have to give them multiple times a day. Jason's best friend from high school was a T1D and he took his own life by overdosing on insulin. I have a fear of what it can do but know it is necessary for Bekah to survive. It was in these moments of despair that I released it all to God. "You are strong where I am weak, I need your strength" (that is the very short version). I laid my head down and slept for an hour or so. It was time to get ready to go back to the hospital. I was ready to face the day anew and dive in to our "new normal" This is our life and I was, still am, determined to make it the best it can be no matter what!
My FB post that morning:
Last night I did the shoulda woulda couda thing and went through what I ate while preg etc. You moms know the drill. I'm running on an hour or so of sleep but I am ready to face this day and find our new normal. No going back, it is what it is and we will do the best we can with what we have to face. God loves my baby girl more than I do and we will find a way to glorify Him in this!
I took David to my parent's house and couldn't get back to see Bekah fast enough. The amazing nurse we had the night before was no where to be found but what I did see when I walked in to the room sent joy through my whole body. My sweet little angel girl was sitting up in bed eating an egg and cheese omelet. Soon we were out of the PICU and on to the regular floor. We had to share a room but tried to make the best of it. THe next step was education so we could manage all of this at home. Overwhelming is an understatement! The next few days were challenging to say the least but I think that is for a different blog.
As I took the time to reflect on the whole thing and read over the comments left on my FB page I am so thankful for such loving supportive friends and family. You were all there to lift me up when I needed it most! Thank-you!!
Wednesday, April 21, 2010
To begin this blog
I decided that it might be therapeutic to blog. As a busy mom of four I'm not sure when and if I will have time. Our lives just changed with our 6 year old daughter being diagnosed with Type 1 Diabetes (T1D) and I just need a place to vent. I'm not even sure if I will make this blog for public view. Stay tuned for our diagnosis story...
I decided that it might be therapeutic to blog. As a busy mom of four I'm not sure when and if I will have time. Our lives just changed with our 6 year old daughter being diagnosed with type ! diabetes and I just need a place to vent. I'm not even sure if I will make this blog for public view. Stay tuned for our diagnosis story...
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