Phases

Emma goes through quite a few phases. Sometimes these phases change several times a day, sometimes several times a week or even several times a month. Some of these phases are going to give me gray hairs and some make me giggle. Demanding to be in control of everything; what show we all watch, what games the girls play, how the blanket is spread out-gray hair. You would be surprised that the little doll most know her by can scream, hit, claw, bite(to name a few) if control is taken away from her. Dancing to every song that she ever hears, tucking my hair behind my ears(sometimes I pull it out just so she'll tuck it for me) and signing I love you all giggles. She can really melt me in these sweet tender moments, it sure goes a long way when we come out of a "gray hair" phase. Lately she has started sticking her tongue out at us. It is so funny and makes teaching her to not do it quite difficult with all of the stifled laughter.

We have a tradition each morning she gets on the bus. She always has to carry her backpack, she always gives me a kiss and a hug on the first step of the bus and while the aid buckles her in the harness she blows me kisses and waves. I always sign "I love you" to her when the bus pulls away and she'll sign it back(along with her bff Toby who sits behind her). Well, lately instead of signing "I love you" back she sticks her tongue out at me.

I giggle all the way to the door.

Her strength

When Emma wakes up in the night she'll turn on the light, sit by the door, and call for us over and over or start crying. If she calls for us, I know that she's going to be somewhat draining. She must feel somewhat crappy to not sleep, but well enough to run a rat race at 2:30 in the morning. If she wakes up crying, I know she feels horrible-she's sick Emma. Early this morning, Emma woke me up crying. When that happens, I always jump out of bed with my gloves on-meaning a huge rush of adrenaline comes over me. It sure does help in the moments when this inadequate mommy needs a push to deal with some situations. Really-she's 50 lbs now.

The hard moments we've had and times we are tested to the very core vanish when I see sick Emma. I'm telling you, as a parent of a child with special needs, there is pain in watching them suffer. They go through a lot, big or small, there is always something. Emma runs around with different illnesses that would knock me off my feet for a couple of days. She can do that, she's built up a tolerance. The interesting part is that for some reason the most tender moments with her come when she's sick Emma. She comforts us, she loves us. More times than I can count, she's put the palm of her hand up to my cheek and given me this look. A look that is so wise and comforting. I see her true character shine through in some of her toughest moments-always with sick Emma moments.

Her insulin pump site occluded in the night-went bad and stopped delivering her medicine. On top of that she has another cold. Since the end of September she has had a cold, a sinus infection, a yeast infection, another cold, another sinus infection and now a brand new cold. Even dinky colds spike her sugar nonstop and create a lot of issues for us to deal with. The no insulin combined with an illness created a situation that was on the scary side today. She was white as a ghost, lethargic and kept lifting her jammies to show me her stomach hurt. All I know is that her sugar was over 500. She was too sick to send to school and it took until dinner to get a normal blood sugar.

I know it wasn't an easy day for her. Yet, she was so sweet and tender all day, not one meltdown. Her strength is amazing.

Recognition

Tonight I took Emma for her annual blood work/screenings. I've had some anxiety about it this time, I should say more anxiety this time. The fact that I've procrastinated taking her in since the end of October is proof enough. After the screening this summer and getting blindsided with Celiac disease, I've been nervous. We've had enough emotional trauma that anymore there is no comfort zone. It's just how it is around here. Nothing that a couple of smooth years couldn't fix. Emma deserves that.

While parking next to the building, Madison said "I think we've been here before". Yes hon, we have. Emma walked into the lab building like a pro, she was so cute. I love getting to be with her when she is in one of her good moods. It is some of the best medicine there is, I soak it up. Her mood was great right up until we crossed through the door into the lab room where they draw the blood. Emma is smart, she knew where she was. It was heartbreaking and adorable(her pouty lip is so cute) at the same time to see her change in countenance. While we were getting Em ready, one of the nurses said "we've seen you guys here before". It was a funny moment, since I had just been thinking the same thing. It's always a reality check for me when I recognize nurses and they recognize us. Life for the most part feels "normal" to us now. We've adjusted, it's our life. There are times though that the differences, compared to before, will slap me in the face and I'll feel the difference more. Tonight was one of those moments. It always ends up being a good thing because after the journey it takes my brain on-I always recognize how lucky we are to have Emma.

Sugar High

Emma's sugars are so bad right now(really they are always this bad) that we are meeting with the Endocrinologist monthly instead of every 3 months. They check her a1c every time and it's high every time. We went last Thursday and her a1c came in at 9.8, it makes me so upset. We've been in the dangerous range for awhile. It's impossible to describe the frustration I feel in trying to establish good control. It feels like it will never happen, especially when you factor in all Emma's problems that play a role in sugar control. Mainly, her high incidence of illness. We left September's appointment with a new plan for the following month to try for better control. Less than a week later she was ill with a cold and it really affected her sugars. Some illnesses make the Diabetes harder than others. This cold produced dangerously high sugars and large ketones which could have easily lead to a life threatening condition called diabetic ketoacidosis . We're 5 years in with this disease and this particular cold has made the list as one of the hardest we've dealt with(as far as sugar control goes). One bright note is that Emma is older and will drink fluids when she is running really high. She recognizes the thirst associated with high blood sugar now and contstantly wants to drink. It's such a far cry from when she was tiny and would not drink for us, it would easily land her in the emergency room for iv fluid. The plan we left the Doctor's with in September never happened after the cold turned into a sinus infection. A round of antibiotics, a horrible yeast infection and now a new cold later-I wasn't surprised to see an increase in her a1c level on Thursday.

Every day we are battling a disease that has devastating complications from uncontrolled blood sugars. Every day it feels like we are losing. We really need a cure.

Season of the Neb

The season of the handy dandy nebulizer, aka flu/cold season, has started and is in full force. We were forced to dust it off the other night after Emma came down with a cold and it really triggered her asthma. It's a little disappointing, since we were finally getting better control with her asthma. Here's to less time at school, church and being outside!

To screen or not to screen?

SCREEN. Since Emma was a baby, her primary physician has followed the recommended guidelines for a baby/child with Down syndrome. A lot of it has involved screenings for things she is high risk for developing-like leukemia, hypothyroidism, eye problems, atlantoaxial instablility and celiac disease. I've always had mixed feelings about these screenings. Who would like it when their child is being screened for leukemia? This summer we switched to a new Endocrinologist, this post I mentioned a not-so fun time with the old one. Anyway, the new doc wanted to run a screening on her thyroid and check for celiac disease. I thought it was unnecessary and told him so. He gently replied that she needed checked every year(the last endo said she didn't-hmmm) and that he was ordering a more in depth screening for celiac. I gave the go ahead, but procrastinated taking her in for the blood work.

I finally took her, and didn't think much of it because I didn't think I was seeing symptoms. I missed a call from the endo office less than 2 weeks later, they mentioned they got the results from her labs in and wanted to discuss them with me. I wanted to barf, they only do that when something is wrong. I called in and got told that her thyroid was normal, but they thought she had celiac disease. Her endo sure showed me! They faxed her labs to the GI clinic at Primary's, they do what's called fast track for celiac. If you spend time at Primary's, then you know scheduling an appointment will be a 2-3 month wait. With the fast track, however, they get them in for a biopsy(the only way to confirm celiac), right away if the numbers are bad. When the nurse practitioner called less than 24 hours later to schedule her biopsy right away, I knew her numbers must have been bad. I've recently found out what her blood work came in at. Her endo told me that a normal blood screen comes is 3 or below and only measures to 100. All they know is that hers was greater than 100 because it didn't even register-it sounded too familiar. We did the biopsy and have since gotten confirmation that she does have celiac disease. Her small intestine has damage, she has a high level of antibodies, but is asymptomatic-no symptoms. After learning more about this disease and how hard it can be to get a diagnosis, I'm so grateful we know and caught this early. Her last blood screening was almost exactly a year ago, so this has developed in the last year. I like to think, right now, that maybe this has something to do with the back to back viral infections she had this past winter. She had a rough year, the worst back to back cycle she's ever had. This is no joke, the longest she went all fall/winter/spring without an ongoing viral infection was 3 days. Who knows if the celiac played a roll in this or not(probably not)but I would love an explanation for why she got sick nonstop. At one point, I even took her to the doctor to see if she needed screened for leukemia. Or maybe it could explain why she had problems sleeping this past year.

I would be lying if I said I was fine about it. I don't care if there are a million gluten free products, it's still hard committing to another auto-immune disease that lasts a lifetime, even more so with all of her other needs. I told my sister that things will never be the same-again. She helped me realize that Emma joining our family already changed that. She's right, but because of that, I hold on with a death grip to the little remaining normalcy. Letting go of another piece of that is proving to be extremely difficult. We'll be fine though, I'm not scared by this-just tired. We are in the process of segregating the gluten foods from the gluten free foods and buying things for our new lifestyle. I am going to have to relearn carb counts with her new food, and the way it affects her sugars, but I feel like the experience with her Diabetes is helping me adjust easily enough to her having celiac disease.

Screen-you never know what's going to show up. Better to find out now than down the road. Of the few possible problems I mentioned above, we have already caught 2 in Em through her routine screenings. Let's hope for no more.......

Overload

Emma had a rough day today, after 5 years is still breaks my heart. She has been doing really well lately, relatively speaking. Her behavior has been more workable, meaning she responds to my behavior strategies when a problem comes up. Her strength is better too, and I have felt myself relaxing more when she starts walking down the stairs or breaks into a run. Within the last week, however, I have had more and more trouble with her behavior. Each day has been getting worse, and today it was like the dam burst. She just wasn't herself today, I wish I understood what triggers this in her. I tried all of the different techniques I've learned and got nowhere with her. After just a few hours she reached a point where I had one last resort. We call it couch sitting and she hates it. It's basically a sitting technique that will help her feel safe enough to snap out of it, it always works. The old saying "it gets worse before it gets better", applies here. Like I said, she hates couch sitting and at times it will trigger the worst of her behavior problems. It got downright scary for a minute while I struggled to just keep her on my lap. She was hitting and crying and trying to bite me. After I was able to hold her in a position where she couldn't hurt herself or me, she started screaming for her "daddy" over and over and over. This went on for a long time, at least 5 minutes and I cried the whole time. To me, being consistent with discipline is just about one of the hardest responsibilities in raising a child with special needs. It's impossible to describe how draining it is for me. The time and patience it demands will leave me feeling weak and shaky. After 15 minutes or so she snapped out of it, almost instantly. It was like she wasn't really there for a few minutes and then all of sudden she came back. This was enough to do us both in for the day, but 10 minutes later she started to go down the stairs and fell the entire way down. This hasn't happened for a really long time, it scared me to death. I guess I should never get too comfortable with her on the stairs, no matter how well she seems to be doing it. Luckily, she only cut her mouth in the fall. I'm so grateful that she's never gotten seriously injured in a fall like this, especially with a neck condition. I find myself wondering how she could have setbacks in more than one area within such a short time. After the way this upset me, I have not been surprised to see more behavior issues in her throughout the day. Not as bad as this morning, thankfully. I'm so glad she is sleeping now and can rest from these issues that she really has no control over. Today, it was hard being the mom-especially when I love her as much as I do.

Happenings

Potty training, it's happening. A week or so ago, Emma came home with a note from school. It said, "Emma went potty on the toilet". Jumping up and down with added screaming may or may not have happened! I have to say I'm a little shocked that it actually happened. We have been introducing it to her for most of the year, with zero progress. I've been pleased that she showed any interest at all, thanks to her younger sister Abby who provides constant competition. I love that her school offered support in this area, it obviously made a difference. Since the note, Em has gone potty several times at home. The latest was initiated by her and happened without the water running to help her along. I've decided to just let this ride and take it one day at a time, without having a goal in sight. I know this will more than likely take awhile to completely figure out. To be starting at age 5 is just awesome, starting is good enough for me.

Surviving winter is hopefully almost over. Emma has missed quite a bit of school this year, almost all because of illnesses going around. This year has seemed to follow the pattern of alternating good and bad winters every other year. It has been "bad" because she has been constantly sick. No "real" complaints here though, since we are coming up on a year of NO hospitalizations. I think we'll throw a party.

Elopement. This is something I am trying to learn about. A great explanation on this can be found here. It basically means, running away. Although, it is far more serious than kids in general running and hiding from their parents. We've seen this in Emma for several years now, putting a name to it has helped. I guess it validates the changes we have come to accept. Things like, always keeping a watchful eye on her-even when you are smack dab in the middle of a conversation. I wonder what it's like for people to talk to us, trust me my eyes are rarely focusing on anything but Emma. Not to mention, interrupting every minute or so to either find her or check on her. I see it a lot when interrupting her mind set, she does not like to be messed with. Her way of coping with that is elopement, she'll run away or hide. More than once it has been a little scary. She knows how to open doors now and that only adds to the problem. This is just one of the many things that make me want to lock her up in a safe bubble as a way of protecting her. Life just doesn't work that way, so we will take this problem in stride and manage it the best we can. Luckily, it isn't severe-yet.

p.s. She dances ALL the time. It makes me smile........

Tubes again!

Pics from surgery today. All went well, and I'm sure Lisa will update with more info later.

All dressed and ready

My Mom and Me

Waiting patiently.....

Being so good while the nurse checks vitals, etc.

Post-Op waiting for the drugs to wear off.

P.S.

Well it's late and Jeff and I are up with Emma who is sick from high blood sugar. I thought I would pass the time with a quick update. Emma's surgery to place ear tubes was postponed until she recovers from an illness. I so want her to be able to sleep better and this surgery will give her that. But, she has a really bad cough. The last time she went under sedation even remotely close to a cough resulted in pneumonia, so we are just fine waiting. When I talked to the coordinator about pushing it back, I started realizing that she has been sick way too long. Off to the Dr. we went, she was put on an antibiotic for a sinus infection and ear infection. After 1 day on the medicine I can already see an enormous change, even in her blood sugars. I hate that she is on her 4th or 5th round of antibiotics since school started, but obviously she needs them. What do you do? In spite of how miserable she must have been feeling she's been kissing our faces off over and over and dancing away to every song she hears. She is so tough, I love that about her. Even with yucky Diabetes, which does make her really sick. It never keeps her down for long. Not too long ago I spoke with one of the nurses at her school, her husband happens to live with Diabetes(I'm not sure if it's type 1 or type 2). She mentioned that her husband feels sick up to 24 hours after a bad blood sugar episode. It really caught me off guard since bad episodes are a normal part of any day for her. I realized how resilient Emma is through all of this when it is literally pounding her kidneys and body every day. She lives with a really bad case of Diabetes and still smiles. I have so much to learn from her.