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Daughter just diagnosed-scared!

Discussion in 'Parents of Children with Type 1' started by Melanie1216, Jun 5, 2013.

  1. Melanie1216

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    Hi Everyone,
    My dd, Isabel was just diagnosed with type 1diabetes last week and I have been devastated. She is 5 years old and went in after a stomach virus and case of pink eye. She started having to urinate a lot and was thirsty for one day only. My mom , a worrier, mentioned Juvenile Diabetes and I took her in to rule that out or a bladder infection.Well, the rest is history. She is doing well after a 3 day hospital stay ,levels have been good. She is taking 1.5 of insulin for meals and 3.5 of the long lasting stuff at night. they also have her on (3) 15 carb snacks a day and (3) 45 grams meals a day but has said later something about flex. Forgive me for not knowing the names right now of the meds, I am so scattered still and overwhelmed. She is slowly getting used to the pokes and shots but it is still sad when she asks why or cries about it. How do you handle the question-why me? from your kids? She has went right back to school and I have taken a couple weeks off to get used to this. I am just feeling sick to my stomach and afraid to leave the house with her besides going to school but I HAVE been going out with her , it's just hard plus I have an 8 year old and 22 month old. I know everyone is different but when will I feel like things are ok again and lose this sick feeling? The 3 am check of her blood really bugs me for some reason and I even dread going to bed now. I know she will be ok, but I worry I am not feeding her quick enough or of her getting low-I worry about everything. Did anyone see a counselor to talk about their feelings about the diagnosis? Did anyone who works take extra time off? The nurse told me the dr of my daughter is unlikely to give me the approval for any additional time off for FMLA and they want me to get back to my normal routine immediately. I am married but my husband works too, he is being the positive one right now. So the kids will be with my mom all summer, I need time to train her and also she is caring for my grandma who has really bad dementia, the situation is not ideal. I wish I could take more time. I'm sorry to vent and whine but I just feel so sick about this. We have our classes next week. Will I ever feel okay again? I feel so sad for her, it breaks my heart. I know she will adjust, but I still can't stop this sick feeling. sorry this is so long..
     
  2. greenpalm

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    Hi Melanie, and welcome.

    I'm sorry you had to join this club. I know exactly what you are talking about.

    My daughter is 6, and she was just diagnosed 3/10, that's been 89 days, but who's counting? :)

    She too cried and cried and asked, "why me?" And it broke my heart into tiny splinters. I just always did my best to hold her and hug her and acknowledge those feelings. I agreed with her, "you're absolutely right! It's not fair, and it's not fun and it's horrible." I never once tried to say, "it's not so bad," or tried to talk her out of her sadness. Because, what do I know! Sometimes we both just cried.

    ETA: one other thing I told her was that, "when you can't be brave, I'll be brave for you." That was after a wrestling match to get an injection in. <sigh>

    I does get easier, and it does get to be less overwhelming. You are grieving, and it hurts. It's still going to hurt and you're still going to be sad, but it will begin to heal. I think back now on those first days, it occupied every thought.



    I'm glad you found the group. But I'm sorry you have to be here.
     
  3. nebby3

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    Sorry you have to be here. I think everything you are feeling right now is normal and we have all been there. It is overwhelming and there is a lot to take in. Give yourself time. You also need to grieve. This is a loss and it is normal to go through the stages of grief or something like them.

    Doctors take things slow at first, both to give you time and because it takes them a while to figure out a routine that fits your dd specifically. They start off with something that seems pretty strict, telling you when and how much she can eat, but that will loosen up over time. Most of our kids can now eat what they want when they want. The more you educate yourself (being here is a great start) and push, the faster it will go.

    Unfortunately, many of us still do the middle of the night checks. Diabetes is always changing and it is hard to let them go 8 hrs at night with no checks. You get used to it though. I remember praying all night when mt dd was first diagnosed that she would be okay till morning. I still pray about it every night as I go to sleep but it doesn't keep me up (maybe because I am too tired overall).

    Everyone is different, for me it took a year to feel at all comfortable with D and about 3 years to feel like I was on top of the whole thing--if one ever feels that way. But my dd, who was diagnosed at 19 months old, is now 11, almost 10 years with this disease. She is happy and healthy and doesn't let D stop her from doing what she wants to do. Any anxiety that is still there over D is mine; she takes it all in stride.
     
  4. Anyelday

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    What you are feeling is totally normal. For me if felt a little like post partum depression...which was strange because I was 32 weeks pregnant when my daughter was diagnosed. I can promise you will feel yourself again...it takes a different amount of time for everyone. If you think talking to someone would help you then do it and don't let anyone discourage you. It takes time and all the new things that seem hugely overwhelming now (checking blood sugar, drawing a shot, giving a shot) will not in a few weeks.

    I have found a lot of support from other families...whether local or online.

    We are coming up on 6 months in June...my daughter is 5 too and she is doing great. She said she would like to be your daughter's friend.
     
  5. nanhsot

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    Your feelings are very normal and it's all part of the process unfortunately. Every parent here can relate to those first days and weeks of worry. I am fortunate in that I have a flexible work schedule so was allowed to work from home. Could your mom or grandma hire short term assist for the grandma so you mom can focus on you and your daughter for a short while? If she just needs watching for safety, maybe a teen that's off for summer, be creative in that. I would have mom go to the endo with you for some training, if she is staying with your dd over the summer she needs to be just as trained as you guys.

    Here's what I know: you'll dream in numbers for a while, you'll go to sleep thinking diabetes and wake thinking diabetes. It will consume your thoughts for a while but slowly and surely you'll wake up thinking about if you remembered to let the dog out instead of what her blood sugar is...this will all become routine sooner than you think.

    For me the first month is fuzzy, you just sort of get through it. The next few months life takes on a sense of normal, with some new added worries and tasks. The first year is one of adaptation and learning and growth and change. You'll get through it and you'll do the next right thing, every day. Focus on that..do the next right thing today. You'll make mistakes and you'll get through those too.

    The best analogy I have is that at first diabetes is a loud clanging gong, not at all pleasant to listen to and never goes away; over time you realize the gong has some rhythm, and it no longer hurts to hear. Pretty soon you realize that there just a background hum of music, sometimes the notes are off and irritating, but most of the time you don't even hear it unless you concentrate, but it's always there humming away.

    Once you feel like you are not swimming in an ocean without a life preserver (which for me was about 2 weeks) definitely ask your MD about flexing the meal plan. That basically means that instead of set amounts of food and insulin, you learn to count carbs consumed and give insulin based on what she wants to eat, so it's a more normal way to live.

    You're going to get through this, I promise! Your family will pull together and you'll learn what you need to learn, because your precious girl needs you to. She'll learn too and you'll be simply amazed at her courage and tenacity. I can't really help with the tears, my son was a teen at diagnosis, but I know lots of others will have input and advice.

    Glad you found this place, welcome, ask questions and learn, with education comes a lot of peace.
     
    Last edited: Jun 6, 2013
  6. SandiT

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    Hi Melanie,

    You're not alone. There are a great many of us that felt like you do. I'm a few months ahead of you, and I have bad news, good news, and even better news.

    What stands out still for me the most in those first days is how horrific it felt to hold my sweet baby (okay, she's 6--still my baby!!) down and stab her. Now, intellectually, we know it's best for her. That it's life or death. But you sure can't tell your heart that, you know?

    It's the right thing to do, but it feels so achingly, horrifically wrong! I cried so very hard when I had to hold her down to stab her with the poker or with the needle. Oh, sure, it's "just" a needle or a poker... but it's her mommy doing it to her and it's so confusing and painful for her that it wouldn't matter emotionally what it was... it felt wrong, period.

    The bad news, let's get it out of the way. 6 months out, I still sometimes feel that, though it has morphed into sorrow more than agony. It's still not fair that I have to stab my sweet baby every day, or that she has to have that done (or do it herself) for the rest of her life. And in some ways, when she finally gave in and quit fighting, that "learned helplessness" hurt me just as much in its own way.

    But the good news in that, is that while I couldn't believe she'd EVER get to the place where she'd accept it and not mind it... she did. At the timeframe that you're in, I couldn't fathom it. Intellectually, I believed them, but my heart and emotions sure weren't buying it. Every shot and every pokey was hell. I'm told that I'm exaggerating when I say that, but I think you know that I'm not, you know?

    However, the truth is that at 6 months out, she's not happy about it, but there are times she actually ASKS for a needle so she can have some ice cream or other things. From your perspective, that probably sounds both very relieving... and yet very ugly at the same time. Believe me, I get that. I never wanted my daughter to have to make that choice... a needle and ice cream, or look in the other hand... nothing... pick one. Gut-wrenching from where you are. I remember that, too.

    From a few months out, though, that's mostly relief. It says she has adapted and adjusted and the choice isn't anything near as ugly to her as it is to me. From her perspective now, it's a little inconvenience to have... ICE CREAM! OH YEAH, BABY! Are you kidding me, you think I'm letting a little thing like a needle get between me and my ice cream? Are you off your cracker, cheesehead?

    Of course, I'm being a little silly, but I think that helps to let you know that there's light at the end of the tunnel. There will come a day--and not so far down the line--where you can crack a joke about it. Sooner than you can remotely imagine right now.

    I know your world feels like it's falling apart. Like all parents, you want your child to have the most carefree, best childhood possible. You do everything you can to try to protect and nurture them... and they get diabetes anyway. It's unjust, it's unfair, and it feels like the death of that dream of a perfect childhood.

    The best news of all is that in a few short months, your sweet baby will have gotten used to it enough that she can be "the old pro" for a newly diagnosed child. She'll be able to, and happy to, show the 'newbie' how much courage she has, and that a needle is no big deal. She'll be proud of herself and she'll be happy more than she's not happy. The biggest issue you'll be facing then won't be the shots or the finger pokies (I know, can you IMAGINE? probably not right now!), but instead that she feels different from other kids because she has to stop for shots or BG checks.

    Now, I had a part time job, and my husband and I agreed and I quit. So if you need extra time, talk it out with your husband, talk it out with your boss, and take as much time as you can financially bear to. Don't let anyone dictate to your how your family needs to handle your crisis. You understand? This is about your family. Because other families are experiencing the same crisis and did it this way or that, doesn't mean that you have to. It's normal for children to regress some when this happens, so if your sweet baby gets more clingy or needy, and wants just you all the time, that's expected and it's normal and don't be afraid of it.

    Do what you need to for your family, and tell your endo, very courteously but very directly that, "That won't work for my family. I need time to spend full days with my mother and my daughter so that my mother becomes fully up to speed on everything she needs to know. I am going to do what's right for our family right now."

    You are your baby's number 1 advocate, and ultimately, you are the boss, not your endo. Your endo works for you. Okay? Remember that. Your endo is supporting you in the care of your daughter, not the other way around. You are the primary caretaker, and you do what you know in your heart is the right thing. If going right back to work feels wrong, then you sit the appropriate parties down and you tell them what you NEED in order to care for your baby girl.

    You tell your boss that the extra time is NEEDED in order to ensure that your mother is prepared for all eventualities and won't keep calling in requiring your constant help, input, or you leaving to go assist.

    You tell your husband the same thing. Be logical, be methodical, be reasonable. Approach it from the standpoint that this is best for all of you, even if it'll be financially a bit tighter for a while... but think how much tighter things will be if you lose your job because you didn't take the necessary time to fully engross your mother in your daughter's care, is what you argue to your husband. Men get that, usually, where they may not "get" the emotional need you have to nurture her and be sure she's ready before you "move on" from this by going back to work.

    Speak his language. Speak your boss's language. That will get you where you need to be.

    In the meantime, I don't think that counseling is a bad idea at all... on the other hand, the overwhelm doesn't last forever. It feels like it will right now, but it most likely won't. Your feelings will change with time, some better, others just as rough in their own way... but you'll also come to a point where you feel more often "okay" than "not okay". That's hard for you to imagine right now, but it's true.

    Six months out, I still cry sometimes. But I more often feel okay than I feel bad, and 6 months ago, I couldn't even remember what that felt like.

    Hang in there. It's all so huge, overwhelming, and shocking right now; but those feelings aren't forever. They just feel like it.

    Remember and hold onto the knowledge that almost all of us felt like our kids would never get to a level of comfort with it, and almost all of us cried like babies ourselves over having to do this to our children. But you're ahead of the pack in that, you are DOING it. You are DOING what you have to do, in order to keep your sweet baby alive and feeling healthy again instead of hurting and sick. Bless you for that, because I KNOW how hard it is and how wrong it feels to be doing the right thing.

    You will get through this. You truly will.
     
  7. Annapolis Mom

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    You are going through so much right now, I really feel for you. I was in panic mode for the first 3 months or so following diagnosis, and consumed by diabetes for at least the first year (although I believe other people did a lot better than I did). But eventually things felt better, and then they felt a lot better, and this will happen to you, too.

    In the meantime, take some deep breaths, take things one step at a time, and accept any help that is offered to you.

    Although I only took a few days off work, I have a very flexible work environment which I definitely needed. If you feel you need an extension for the FMLA, try to get it. I would even shop around for a doctor who will sign the paperwork. Could your daughter's pediatrician do it? Could you find a psychiatrist for yourself who would do it? Your own doctor? I'm not sure how the law works, but sometimes you just need to know that you can take time off if need be.

    As for seeing a therapist, I called my former therapist just a few days after Hannah was diagnosed. It was a big help, gave me perspective on things, and ensured that I focused on myself for at least an hour each week.

    Good luck. I know it's so hard right now. It really gets better--a lot better.
     
  8. cdninct

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    Welcome! I also have a 5 year old (boy), and he was diagnosed at 2.5. He is doing well, and so am I!

    There is no doubt that the beginning is hard. For me, I left the hospital with a child that I felt more helpless to care for than my first newborn! With my first infant, I learned over time that a baby is more resilient than seemed possible and that I was totally able to care for him. The same happened when he was diagnosed.

    Comfort comes with experience, and experience comes with time! You know what you need to take with you when you leave the house, and you know what to do if she is low or high. You probably have your endo's number memorized at the moment (!), and you know how to contact emergency services if necessary (something I have never had to to in 2.5 years, and I know that is true of most people). You are covered! Start small, but make sure you get out of the house and back to life. It will make you all feel so much better.

    Checks and shots are no fun for anyone, but they need to get done. Just make them as matter-of-fact as possible, and get through them. Remember that checking BG often will help you to feel better mentally and will help her to feel better physically, so if you have been given advice to check only at certain times, think seriously about doing more checks so you don't feel like you are in the dark so much of the time. And, yes, the 3am check is awful, and I know what you mean about dreading going to sleep, but it really does become second nature!

    I was really upset when he was diagnosed, and I felt all the things you felt. At first, it seemed to hang over me all the time, then it was just certain times of day, but I still woke up feeling a sense of dread. Then I started waking up feeling just fine, although the day sometimes dragged me down. Now, something specific has to happen before I get upset about diabetes. It comes and goes in waves, but with less and less frequently.

    It is perfectly fine and healthy to acknowledge all the sadness and anger. You should feel that way right now, so don't think there is anything wrong or abnormal about it. If, however, you find that you are not feeling better as the weeks go by, then do seek out help. Once again, you are totally entitled to it!

    How do I feel now, over 2 years in? I don't like diabetes, and neither does K. A cure would be great! Still, we lead a very normal life. I have to do more behind-the-scenes work to make it happen, but that is just fine with me. We go where we want, when we want. He eats what he wants, when he wants (subject to the same rules as other kids, of course). He is happy, he is healthy, and overall I don't think he is really any different than he would have been if he had never been diagnosed.

    You will get there! Good luck!
     
  9. tammy82

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    Hi,
    Sorry about the diagnosis. It will take a few months to get adjusted. It is overwhelming at first but before you know it believe me it will be like second nature. You will worry always but over time the anxiety will be a little less. There will be a lot of trial & error for a while. Looking back I see things I did wrong but didn't know at the time. I can now say Im a lot better at handling those situations (sick days, stomach bugs, etc.....), it will come with time.

    Injections used to give me a lot of anxiety (on top of that my daughter also had developed a blood clot in her leg a few days after Type 1 diagnosis. She also had to get two gigantic blood thinner shots per day for 2 months along with her Novolog & Lantus). As soon as my daughter was put on the pump 3 months later a lot of the anxiety went away. My daughter was 18 months when diagnosed. She is now 9 and I cant believe we got through all of these years fairly easily as the time went on.

    At the time I was a stay at home mom so luckily didn't have to worry about taking off of work. I cant even imagine how hard that would be. Is there a way your husband can help out with the night checks. I guess Im lucky my husband goes to bed late and gets up early at 4 or 5 in the morning so takes that burden off of me with those checks. It may help also to buy a baby monitor to keep in your room to give you a little piece of mind.


    As far as the grandmother don't feel bad. My daughter's grandparents did put forth a little effort to learn but felt nervous and only do so much. My mom is too old and lives far away so we are pretty much on our own. I only have my 21 year old daughter who is able to watch my younger one if we go to dinner.
     
  10. Helenmomofsporty13yearold

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  11. Christopher

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    I know little ones get a lot of baths so just make sure that you wait at least 2 hours after giving insulin to give her a bath. The hot water can cause the insulin to be absorbed faster and may cause a low.
     
  12. danismom79

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    I'm sure someone will correct me if I'm wrong, but I don't think you need her doctor's approval for FMLA. I ended up being out of work for a couple of weeks. My daughter was in the hospital for 4 or 5 days, then home for a few days after that, then she went back to school. The week after that was school vacation. My employer is very flexible and I just took my paid time off.
     
  13. susanlindstrom16

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    You will definitely feel ok again!! All the learning and adjusting is overwhelming at first, but it truly will eventually just become part of your everyday routine.

    I was able to take FMLA leave for a few weeks, and I did not have to have a doctor sign off on it if I recall correctly. I'm in NJ, not sure if that matters. It went through my HR department at work. I would have been completely worthless at work, I really needed that time to adjust and learn. I would check with your HR rep and see what they require, they should be able to walk you through it.
     
  14. shannong

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    You CAN do this. You will feel okay again. Your life will be changed, but you will adjust and you, your children, your family will all be okay. For awhile, you will feel sad - and let yourself feel sad. You need to grieve and it will only delay the process if you don't let yourself be sad.

    In the beginning, it just about broke my heart in two seeing how sad and frightened my son was about having to have shots, etc. I put that on my list of definitely one of the worst times in my life. But you know what - he quickly, and I mean within days, went back to being his happy self again. I took my cues from my son - he can accept this and move on, so I can too.

    It is very hard learning everything in the beginning. There will be a learning curve. Be patient with yourself, you can't learn everything in a day. All you can do is your best.
     
  15. Sarah Maddie's Mom

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    If shots are causing all the stress then you might look into an "inject -ease"
    http://www.amazon.com/Ambimed-Injec...F8&qid=1370536264&sr=8-1&keywords=inject+ease

    There is also this
    http://www.rakuten.com/prod/1-bionix-shotblocker/249995992.html?listingId=285442902

    These sorts of things helped my dd when she was small.

    If finger sticks are the issue then you might post which lancing device you are using and how and perhaps we can suggest something different. They are not all the same.

    It takes time but you adjust - and so do they.;)
     
  16. sariana

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    I am so sorry to meet you :( I say that only in that this is how we meet and that it is only something sad that brings us together.

    My daughter was 2 when diagnosed and we had the why question even then. Matter of fact, in her mind, she had figured out that she would no longer need the meds once she left the hospital. It will be tough for a while trying to get used to it all. But there are a few bright things to remember. She can live a "normal life". She can grow old, go to school, work, get married and even have kids. Her illness is something that cannot be seen through appearance only, which is sad, but it makes me feel better. When she asks why, we usually tell her that she is so special that we know that she can handle this in her life. She is so strong that she was given this. We were so smart to notice it and gain the information needed to take care of her. Caedence understands what we are saying when we say that.

    The nights, I cannot give any advice. 6 years later and we still get up every night at least 2 times or more. It is starting to affect my health, but there are so many horror stories out there that I refuse to let it happen.

    My dad was diagnosed in his early 30's so I knew what life would be like when she was diagnosed. My husband had no knowledge other then when he met my dad. I told him that she will live a "normal life" as long as we/she takes care of it. All it takes is some preparation. He felt better knowing that as well. With all of the technology out there, a cure is on the rise. We hope to see one in the next 10+ years!

    Become vocal on these forums, the people here are wonderful and are going through the same thing that you are. If you have a JDRF office near you, turn to them as well. We do the walks every year and have started a school kids walk in her school. The more that she knows that she is not alone, the better that she will feel. When she starts school, become good friends with the nurses. They can also give you some support!
     
  17. DavidN

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    Melanie,

    So sorry about Isabel's dx. The first couple months can be very difficult but it does get better. A good early step for you was joining this group. I've found it to be a terrific place for support and instruction. Hope you have some peace soon.

    David
     
  18. shannong

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    I don't want to overwhelm you with information at this stage, but when you get a chance to have some time to read, I would suggest books like Gary Scheiner's Think like a Pancreas and Dr. Ragnar Hanas's book Type 1 Diabetes. These were invaluable to me in the beginning.

    Also, you mentioned that your child gets their long acting shot at night. I found it worked well to give my son his long acting shot in the morning because he needed less insulin at night, and the long acting insulin tended to not be as potent by night-time. When we started, the dietician was going to have us give the shot at night, but the nurse interjected and said no, I think it would be better to give it in the morning. One of the best tips I received!
     
  19. Melanie1216

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    Thank you everyone for all your kind words, you've given me some hope that it WILL get better. I feel like Isabel is adjusting way better than me. She is already pricking her own finger! She has been low around 70 a couple nights at 3 am and this has scared me to death. She is very active in general-she skips everywhere she goes and I just want to tell her to stop it, but I don't of course..Do your kids wake up when you check them at night(3 am ish) she has the past couple nights because I have to pry her fingers open and by the time I have it ready the meter thing turns off ugh..I have had SOOO many people tell me they know a family or friend that has it and I can talk to them and for some reason I'm just not ready. I don't even know what I would ask right now, I'm just trying to get through the day. I also had a mentor family contact me. I had some issues with depression just prior to this and I felt like I was FINALLY turning a corner and then bam! I guess that's life for you. I was feeling overwhelmed with my 3 kids and work and now this..
    Did it bug anyone else when friends said things in the beginning like "look at the positive side" or "don't worry, it can be managed" I think they have no idea what it entails. and so many people have said "well hopefully she grows out of it" what?! I wish she could. I never in a million years pictured this happening to us. I know bad things happen and my own first cousin has diabetes(type 1) but this still totally knocked me off my feet. Luckily, her school is very supportive. There are already a couple kids that have it there and one is the same age as Isabel. They met the other day and didn't say much to each other, although we explained what they had in common. The secretary plays nurse but has been doing it for a couple years and knows a lot about it-she is great. Today, I was told Isabel's doctor would not feel comfortable approving the FMLA papers for me. So they will just approve leave for classes and appointments. So I guess I was supposed to leave the hospital Friday night and return to work Monday-sorry I couldn't do that. I guess I will just take vacation time until the end of next week and then hope I am mentally okay to return. Whoever said their daughter wanted to be friends-I am sure Isabel would like that-thanks! Thanks again everyone-I have hope now that this pit in my stomach will go away someday.
     
  20. Melanie1216

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    I also forgot to mention that we went on a field trip with her class today and at lunch she was at a 65! I was so scared, but called the nurse and they helped me through it. How often do lows happen? Is this just because they are getting her blood levels steady?
     

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