Our Little Emma

Searching

2011-02-15T21:21:00.002-07:00

I'm searching for answers. I've felt that there is something more than the typical "she has Down syndrome and Diabetes and is more prone to illness" reasoning for Em's string of colds/sinus infections. Last year her back to back colds were worse than they had ever been. Worse meaning that she got sick too soon after the last round of illness and each time the length got longer. This year I'm seeing the same thing. Back in October of this school year, I started bringing my concerns up each time we were at the Dr and each time we really didn't get anywhere. I decided to follow up with her Ear, Nose and Throat(ENT) Dr and feel glad that I did. He definitely agreed that we had a problem that needed addressed. My main concern I brought up with him was that we lived in our own version of the Bermuda Triangle. Emma has sleep apnea, Emma has Diabetes, Emma constantly battles upper respiratory infections due to her susceptibility. The respiratory infections make the sleep apnea a nightmare to deal with(meaning she rarely sleeps), the Diabetes makes it harder for her to fight these infections and in turn the infections make the Diabetes almost impossible to control. Her A1c level was recently checked and came in at 10.4, that's a huge jump from the last A1c and says a lot about how bad her Diabetes has been. When the longest time frame between these infections has only been 5 days, it's not hard to see why our family lifestyle is significantly altered right now. I understand that she is more prone to illness and that all of the things on her plate(Diabetes, etc) complicate things. But, I also feel like something can be done to make the quality of life for her and our family a little better. I just don't know what yet.

Her ENT asked a bunch of questions and was particularly interested in the points I made about how her respiratory illnesses always start 3-5 days after the last illness and she's the only one sick in our household. I was hoping there could be a magic fix and things would get better fast(ha ha)but he would barely talk about surgery on her sinuses as an option. I always thought that Emma was getting colds and then they were turning into sinus infections. But, he thinks that she might have an infection deep in the sinus cavity/cavities. Even though she's been on antibiotics multiple times, he thinks that she wasn't on long enough for the infection to be fully treated. So instead of colds turning into sinus infections, we might be dealing more along the longs of recurrent sinusitis. So the plan for her is to follow a 6 week course of antibiotics( I think it's a lower dose each day so the length of use could be extended). He's going to have a Ct scan of her sinuses done at the end of the 6 weeks to look for blockage or the lingering infection. If the scans show significant infection or blockage still, she will more than likely need sinus surgery. He also referred us to an allergist/immunologist. We go next week for some testing.

We don't exactly have answers, but I'm glad that we are at least on the right track to finding some.....

Phases

2010-12-17T08:09:00.003-07:00

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

2010-11-18T19:19:00.003-07:00

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

2010-11-17T21:13:00.002-07:00

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

2010-10-30T10:27:00.002-06:00

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

2010-09-30T22:26:00.002-06:00

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?

2010-09-12T22:17:00.003-06:00

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

2010-03-15T21:27:00.006-06:00

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

2010-03-07T21:15:00.004-07:00

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!

2010-02-01T19:38:00.003-07:00

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.

2010-01-16T00:17:00.004-07:00

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.

The good, the bad, and the ugly.

2009-12-12T08:40:00.007-07:00

Time to fill everyone in on how she's doing. I have mixed feelings on this, it's hard to give just one answer. There are several areas where she is doing great and others that aren't so hot right now. The good-she is still excelling in school. I recently met with her principal and others that work with Emma at her school for another IEP. It was a really great meeting, except that not everyone could make it so I have to go back to meet with the speech therapist and physical therapist. I felt more confident in the process this time. It's been really overwhelming to me to understand the IEP process. I have a hard time trying to figure out what goals to set for her and where I want her to be. I don't want to put limitations on her growth, but she is developmentally delayed so I have to be realistic. OVERWHELMING. I thought a lot about what I wanted for her right now and went into the meeting with some things to discuss. Naturally, I have a hard time making decisions and standing up to people. For some reason, the whole advocating-wanting what is best for her really came to me this time. We spent the majority of the time trying to figure out where to place her for next year. It's a big decision and I'm very grateful that I have the support of her teacher and the principal. When she was first moved to the Dan Peterson school, we knew it would be only temporary. Technically, she doesn't qualify to be there from a development stand point. Medically, she does though. Going from early childhood intervention into the school system was a nightmare. She was the first one to make that transition with juvenile diabetes from kids on the move, so I don't think anyone knew what she needed. The diabetes is difficult with her since her communication is delayed. She never tells me if she is sick or that she feels hungry. I really had to learn her behavior associated with high and low blood sugars. So to place her in a full classroom where there is only 1 teacher and 1 aid, neither with any diabetes training did not work. Although her teacher at her last school tried really hard, bless her heart. She even told me, I don't know how to be her teacher and her nurse. Most kids in school with juvenile diabetes can manage it by themselves. Obviously, Emma can't so this is tough to figure out. Dan Peterson is staffed with a lot of nurses so moving her there just worked. Her teacher could focus on being her teacher and the nurses took on the diabetes. The plan was to give her a couple of years at Dan Peterson and then maybe by then she would be a little more help in managing the diabetes. There is a little communication there, but very little. It's more like I can bribe her to eat for me now, instead of me pinning her down and forcing her to drink sugar gel. She doesn't tell me she is sick and I can't tell her to eat an orange and expect her to cooperate. At one of Emma's A1c appointments, she had a low blood sugar. One of the other moms had an orange in her purse(her daughter with diabetes was a teenager) and offered it to me. If only it was that easy-here Emma eat this orange. Ya right! They have had a few problems at school this year managing her diabetes. Mostly, because Emma is being more stubborn with them about eating. This is something I deal with on a regular basis. It really does take a lot of effort to get her to eat sometimes. It makes me worry about transitioning her for the next school year. I don't know how it will work. The principle was really good about processing the new developments with her. We talked about all of the options and she even suggested putting transition off another year on the back burner. We have a lot to think about in making this decision. She didn't meet a ton of goals, but a few. I think she is pretty smart with all that's on her plate, so I'm not worried. They aren't either. Her behavior is kind of all over the place depending on who she is with. She seems to react positively to strangers and new settings, but can have extreme behavior with those she is most comfortable with( I guess that's me). The good news there is that it is improving. Other good news to report-Emma has learned to spell her name. She can't write it, easily forgets and needs prompting a lot, but still it is such a huge milestone for her. She is also talking more and more everyday. There are quite a few moments that leave me asking her to repeat what she said because I can't understand her still. Abby has become a good tool in translating for me, I don't how she can figure it out. Emma is really starting to want independence, it's awesome and frustrating at the same time. She likes to say "all by myself" with everything. She tries so hard to get the words out, it's adorable. She has to scrunch up her face and gets stuck on the transition from all to by myself. She will repeat "all by" at least 3 times before she can make it to myself. It's barely understandable, but we can understand it, so it needs acknowledged. Emma is having less problems with her skin infections this year, thank goodness. She was constantly getting bacterial infections that led to boils, some had to be lanced. I was doing around the clock care to keep it a minor problem. It's nice to be less obsessed with wiping everything down with cleaning wipes. I recently took her in for a yearly exam. Her doctor agrees that she is showing some age appropriate skills, but is closer to Abby's than her own. It doesn't bother me like I thought it would, maybe because I see improvement and not regression in her. That's all that really matters.

The bad news. Emma is getting sick a lot right now(no hospital at least), it makes living with Diabetes hard on her. I hate that. As a result, her latest A1c came in high at 9 something. I knew it would because of the blood sugars I have been battling. It's still really hard to accept. It was one of the harder diabetes management appointments. Emma's behavior is the same when she has diabetes problems or meltdowns. With the communication barrier I can't ask, so I rule out the most problematic scenario first. I check her blood sugar, if that's ok, I can move on and keep digging to find the source. Technically, if you understand how insulin works you shouldn't need to check within at least a 3 hour period. Emma's management is different, I guess. When I do check her blood sugar within the 3 hour period, more times than not a problem has evolved with her diabetes. Not only that, but she is sick all the time and pulls out her pump site a lot. It makes her blood sugar really high and forces me to check her more than normal. It leaves me feeling anxious all the time because I never really know what I'm dealing with, checking her often is my only link to sanity. Her endo kind of gave me a hard time about the number of times her blood sugar is checked this time, actually he kind of made fun of me. I wanted to explain to him our real life side of living with diabetes. I simply just said that she was really hard. I cried on the way home. He really has no clue what I go through with her, so it definitely struck a nerve. I'm still trying to decide if I'm going to find a new Endocrinologist. Emma is having problems with her ears again and isn't sleeping very well. Since before Thanksgiving she is up more than half the night. It's wearing us down for sure. She started getting back to back ear infections so I knew she needed to be seen by her ear, nose doctor. We met with him on Dec. 23rd and found out that she has a retracted eardrum. She's getting tubes put in for the 4th time on Jan 14th. This should help with her eardrum as well. He thinks that the eardrum is why she's not sleeping. The plan is to fix her ears first and if she doesn't start sleeping, then we'll keep digging to figure out what is going on. I'm starting to worry about her hearing, especially in her right ear. He said her eustachian tube is dysfunctional, which is causing the problems. I worry that we'll never get it under control and she will develop permanent hearing loss. Emma is not eating all that great right now either. She is gagging a lot on foods that she used to eat just fine. I'm trying to figure out if we're dealing with oral sensory issues again or if she is just being stubborn. Her weight isn't being affected yet. Her carb intake is pretty sad, so I need to keep an eye on it. All in all-nothing too bad, Emma's everyday stuff is just causing a few bumps in the road right now.

The ugly-This has to do more with my protective side of her. Lately, I have reached a breaking point in hearing the "r" word. If you stopped to notice, you would be surprised at how many times people used the word retarded. It makes me upset when I hear it. I've actually had people call others "retarded" in conversations with me. It's mind boggling to me that people don't realize that they are slamming people like Emma every time they say it. I'm just doing my part to help spread the word to stop the word. Please be aware of the words you use. You can check out the campaign here .

What's new with Emma

2009-09-09T09:29:00.004-06:00

Emma has been doing really well lately. She is attending the same school she did last year and is thriving at school. The crisis moments are getting farther and farther apart and it's giving her a chance to just be a kid. The other day, I watched her dancing with Abby and was overcome with emotion. I was so happy that she is getting moments like that, when I know so many other children with special needs don't. Every day is still hard in one way or another. Either her aggressive side comes out or Diabetes gets in the way or her minute by minute draining behavior will show up(food can't touch, blanket can't have wrinkles, chair has to be lined up just right, I could go on and on). These are the things that we are getting better at handling, they are a part of our "normal" life. I feel like the insulin pump has given her and our family more freedom and feel like we've adjusted to living with Diabetes. It's also helping her overall care, her last A1c came in at 8.2. which if you remember it needs to be 8.0 or below. We're getting closer! She still gets a lot of viral illnesses, but isn't getting as sick from them. She didn't qualify for the extended school year this year and I was really worried that she would regress. All summer long, I was shocked at how well she was doing. Behavior problems and illness were far and few between and I feel like her speech continued to progress. Things have been going so well that I decided to have her join the local dance group made up of individuals born with Down syndrome. She loves dancing with the Sparkly Pals and I love watching her. They had a performance this summer at the Hogle Zoo. Here are a few pictures.

The latest and the greatest with Miss Em

2009-04-28T14:29:00.006-06:00

Easter morning

We almost made it this year, staying out of the hospital that is. I was hoping we could keep her home a whole winter, but it's not happening this year. A week before Easter, Em came down with a stomach flu. It hit her on a Sunday night and by Monday morning we were losing ground with her. She wouldn't eat or drink(always a challenge when she is sick) and her blood sugars were really high all night(loses a lot of fluid with this). Normally, Em's sugars either run low with this kind of illness because she's not eating or they will plateau. I had also given her Zofran around the clock all night and it was not working. Throwing up is not good for her with the Nissen. She was admitted in the hospital Monday morning for i.v. fluids and was discharged Tuesday morning. It was really stressful trying to keep her hydrated through the night. I felt a huge weight lifted once the i.v. was in. It could have been a lot worse. It's never fun staying there, but I was relieved she was in a safe environment since things can change so quickly with her. She was a sick little girl, but was doing really well after she got hydrated. She started eating and drinking, that is why we were able to come home so soon. The countdown has started over, maybe next year...

Her behavior is still really difficult most days. Her and I have met with a family therapist and I have been feeling really good about some of the new things to try with her. I'm understanding where her behavior problems stem from more and that alone makes it a little more bearable. His speculation is that all of her medical issues have led to an attachement disorder. From day one of her life she has had a difficult road healthwise. Due to her birth trauma and chronic illness she wasn't able to fully attach and bond the way she should have, especially with me. It's easy to see for me, all of her life I have had to respond to a lot of her needs and care with some sort of discomfort or pain(shots, therapy, etc.). It's a little difficult for me to swallow because I'm the mom. Moms are supposed to make things better, comfort and soothe. Taking care of her in the way she needed has left her traumatized. Jeff and I both have been traumatized with it all, it's only fair that she is too. So when she is acting out or in a meltdown as I like to call it, she is feeling hyper-anxiety. To make herself feel better, she tries to control or manipulate situations. When I don't give in to her the feelings escalate, resulting in the meltdown. It breaks my heart now that I better understand what is going on. The good news is this is something that can get better, it's going to be a long road though. I called the Utah parent center and was given some great advice on where to receive help, right now I'm currently trying to get it all figured out. I wish she knew how much we love her.

Isn't that picture of her above so great? Can't tell she got out of the hospital a few days before, I love that about her.....

Family Links Conference 2009

2009-03-30T13:00:00.004-06:00

A few weeks ago, Jeff and I attended the family links conference that is hosted by the Utah parent center. It was awesome and we learned a ton. I love going to things like this because it provides an environment where I feel like we fit in. I always say that raising Em is liking living in a world inside the world. It is difficult for us to relate to people around us anymore. Not complaining, but it's true. The keynote speaker was Dr. Robert Brooks, his session focused on from being stressed out to stressed hardy. I really needed his speech! I think he was great, he was funny and also had some great advice. Check out his website. We attended the conference with some friends of ours who are also raising a child born with Down syndrome. We all split up and went to different breakout sessions to get as much information as possible. During the last breakout session, we all met up again and went together. It was a panel board of people all born with Down syndrome from age 8 all to way up to 54. Two of them were even married, and were such an inspiration. They live on their own and have a wonderful life, I was given hope for Em. The audience was able to ask questions and we received such valuable information straight from the mouths of those just like our children. I loved when they were asked about what makes them happy and what makes them sad. I was on the verge of tears the entire time because of the gratitude I felt in experiencing something so amazing. Emma blesses our lives in countless ways. What an experience to remember.

Cardiology appointment

2009-03-13T09:30:00.003-06:00

A week ago today, we met with Emma's Cardiologist for her annual exam. She has this because she had pulmonary hypertension when she was born. I was a little nervous because last year they discovered during her echo that her aorta was a little dilated. Emma was pretty well behaved this time and handled it all like a pro. She always gets scared at first, but after some coaxing and loves she calms down and cooperates. Surprisingly, everything came back normal. There is no evidence of any hypertension and her aorta is no longer dilated. Last year her Dr. didn't know why her aorta was dilated, it was kind of a strange thing. I was SO relieved that it had resolved, I almost didn't know how to react to good news. For so long now we go to appointments and always have an issue to deal with. The cardiologist decided to discharge us from the cardiology unit. He wants an EKG done every year, we'll just add that to her yearly screenings that her Peds doctor orders. He said they wouldn't need to see us anymore unless her EKG shows anything abnormal. It was really great to walk out with no referrals, prescriptions, or future tests to perform.

THE MANY FACES OF OUR EMMA

2009-02-23T17:03:00.010-07:00

Lisa's favorite (signing 'Mom')

Jeff's favorite (signing 'Dad')

'Candy'

Candy, again. (All too often)

content

scared

showing off

Take this!

hmmmm......

bored

hmmmmm....again...

Who, me?

Can't touch this!

Runaway

2009-02-22T09:23:00.002-07:00

Thursday, Emma's Principal called me after Emma got home from school. She wanted to tell me about something that happened at school that day that was concerning to her. While Emma's teacher was at lunch, Emma followed one of the class aids out while she took one of the students to therapy. The aid that left didn't know that she followed her and the other aid who stayed in the room didn't know either. Someone else at the school found Emma about 10 minutes later, she had found a couch and was hanging out. Emma has a tendency to run off now and I do have to keep a close eye(or grip) on her. She wasn't hurt or anything, but she could have easily gone outside and the school is on a busy road. I appreciated the phone call and I wasn't too concerned about it. I doubt it will ever happen again because the Principal told me that there was already a gate on the door and the window and a rule was established to verbally communicate who they are taking and where. I guess Emma was 1 of 3 runaways that day, two went out the window. I felt bad for the Pricipal it sounded like she had a rough day, I was impressed with how she handled the situation though. We still love her school.

A1c and Progress report

2009-02-05T15:02:00.003-07:00

This Tuesday was Emma's A1 c appointment. We meet with her Endocrinologist every 2-3 months. Every time I leave this appointment I feel just as overwhemed as the day she was diagnosed. They run a test called an A1c, it represents the average glucose in her blood over a 3-4 month period. It provides a lot of information to help manage her diabetes better. A1c goals for kids Emma's age(0-6 years) should be below 8.5%. This time she rang in at a 9.1, I was glad that it had come down from the previous appointment(she was at 10.0). With that being said, it really isn't a good number. I don't like that her result lands on the scale where you see Dangerous. I would love to see it in the Excellent control range and would even take Fair control. We have only received a fair once or twice and never ever see excellent control.

This is an appointment that I dread. Besides the A1c, we also meet with the Nurse/Diabetes educator followed by the Dr. They have me fill out paperwork that provides current dosing information. They download her pump and glucometer into a computer system that prints out a summary of her imformation. It adds that info into charts and then we can use those averages and readings to look for problematic times or meals that might need tweaking in her insulin doses. There is no way a teenager could fake taking care of their Diabetes, it all gets recorded. So if they weren't doing anything, the downloads would be empty. I kind of feel bad that these kids are living with that kind of pressure.

They ask me all sorts of questions and while I attempt to answer them, Emma is either emptying all the cabinets out or hitting and screaming. Saying it is stressful is a huge understatement. It is always frustrating for me because they really don't know why we can't get better control. I always feel like it is my fault, maybe I'm not carb counting accurately or maybe I am getting too lenient. Deep down inside I know I am doing at least enough. I also have good reminders, like on Monday, her blood sugars ran in the 100's all day(I did nothing different than any other day). They can tell her blood sugar is being checked enough and that we are giving her plenty of insulin in a 24 hour period. Her numbers are just depressing. Ben, one of the educators, reminded me that I am doing a good job. Maybe he could tell that I was fighting back tears the entire time(I always am). Every time we're there he kind of shakes his head when he looks at her charts and numbers because he doesn't know what to do. We both spent a lot of time looking for patterns. He explained to me that they will usually show up at the same time of day or on the same day of the week or at the same meal. Not Emma, there was no distinct pattern. Her numbers were all over the place. I mentioned to him that I noticed I was getting better numbers when I put her pump site in her arm(we can use the back of the arms, the top of her fanny, her chuncky thighs or her stomach). He still wants me to rotate through the site areas in spite of that though. We both kind of decided that maybe she just wasn't getting enough insulin. Dr. Donaldson came in at that point and came to the same conclusion. He ended up switching everything. He is having us use a new glucometer and a new brand of test strips. He increased her basal rate, that is the amount of insulin she receives about every 10 minutes. He increased her bolus amount, the insulin she gets for her high blood sugars. He increased her carb ratio(meaning she gets more insulin for the carbs she eats) she is at a 1:20 ratio now. She receives 1 unit of insulin for every 20 grams of carbs that she eats. I think it is a pretty agressive dose, I have met grown ups with a 1:10 ratio. Since insulin absorption is the best on the first day of a new pump site, I have to now temporarily lower her doses 20%. It sounds more difficult than it is, there is a feature I can use on the pump. I program how long I want it and how much I want it lowered. One more thing I have to remember in the day, if I don't she could have low blood sugars that first day. It is interesting the things we have to do to "fine tune" her Diabetes management. I have seen good blood sugars since the appointment, but I have also had way more lows. If it doesn't level out, her doses will have to be tweaked again.

Dr. Donaldson is using a new system to help the parents manage better(at least the ones who are on insulin pumps). I spent an extra hour on Tuesday getting set up and learning what to do. I wasn't too thrilled about having to stay longer, but I am excited for a better change. Until now, when her blood sugars were giving me problems, I have had to chart everything for a day or so and fax it into them. The nurses or the Dr. would review it and then fax the changes back. It has presented problems for me because it is not a fast process and like I have time to do that on top of everything else. Now when I need their advice, I will use something kind of like a usb port to download the pump into the program. I can call the office and they will have all the info they will need broken down into log books and summaries. So much less work for me(two weeks worth downloads in like a minute) and I think this will be a valuable tool in them helping us. Doesn't this information make your head hurt?

I received Emma's quarterly report for her Occupational Therapy goals yesterday. All 5 are brand new goals as of this year. They are 1. will imitate and progress to copy from a visual reference the pre-writing lines and shapes while using a tripod grasp on writing utensils. 2. Will find 10 objects hidden in a soft resistive theraputty in under 5 minutes independently. 3. Will match the letters of her first name and then trace her name with correct letter formation. 4. Will use adaptive scissors to cut a theraputty snake into 10 pieces, snip a straw into 10 pieces, snip a strip of 1" wide paper into 10 pieces, and progress to cut along a 6" line. 5. Will button and un-button on a dressing vest in under 4 minutes independently. The performance measurements are (G)=good 75% or more accuracy. (F+)=50-75% accuracy. (F)=fair 50% accuracy. (P+)=25-50% accuracy. (P)=poor=25% accuracy or below. For goal #1 Emma received a P+. 2. She received a P+. 3. she received a P. 4. she received a P. 5. she received a P. A few years ago I probably would have spent the night crying knowing that she scored at the very bottom. But, I have learned to look at her progress with the right perspective. I can't compare it to 'normal" kids, that is depressing. I definately can't focus too much on the actual score. As long as she progresses I don't care where her marks come in at. I am pleased with the progress I am seeing in her.

Speechless and T-cell results

2009-02-05T14:19:00.003-07:00

It's true, I am finally updating about Emma. Things have been interesting and I literally have been left speechless. The results for the stomach issues came back normal. Are you thinking what? Don't worry, we did to. It is a long story that honestly I don't know if I have the energy to fully explain. The short version is that the gastric-emptying study came back at 27%. Anything under 30% is considered normal. When I met back with Dr. Downey, miraculously he wasn't worried about her stomach anymore. To be honest he was kind of a jerk and in a way made me feel like an overbearing, worried parent. He was the one who got "specialist" on me and sent us off on a completely unnecessary rollercoaster ride. Originally, I was just wondering IF I needed to be worried about the reflux that I was seeing. He made no mention the first visit(or really ever) that it was still normal to reflux 8-10% of the time after a nissen. At the follow up appointment however, he made it known like I was some sort of idiot. The appointment was a battle between him and me and actually got pretty uncomfortable. I felt bad for the intern. I wasn't rude by an means(I wish I had it in me to tell him off), but I didn't sit there and take his crap. The best part was when he told me he didn't even think she was refluxing. I am so glad he knows her, since he sees her once maybe twice a year(Did you pick up on my sarcasm?). I wonder what he would call the little puke spots that I have to scrub out of the carpet? I'm pretty sure he knew I was not happy by the end of the appointment and he tried to make amends(it so didn't happen). I didn't even make it out to the parking lot before I burst into tears. He has no idea the way he messed with me. Since day one, the responsibility I feel over her is indescribable really. I would do anything for her and I have learned that if I am noticing a problem it is better to act fast than to wait it out. I don't care if he is one of the best surgeons in the country, it would take something BIG to go back to him. This isn't the first time we have faced "possibilities" that turned out to be nothing, but this was by far the worst experience I have had so far with a Doctor. I have since gotten a few other opinions and feel like the reflux I am seeing isn't a problem unless she starts having symptematic problems(pneumonia). Sigh..............................

T-cells

The t-cell function ended up being normal in her immune system. She doesn't necessarily have a normal immune system, but her t-cell function is normal. I am relieved that overall everything has turned out to be okay with her. It isn't fun to think about the worry and fear we were facing, but it really doesn't matter knowing that she is okay. We will move on from this and just keep going. I am sure it won't be the last time, we have "scares".

Doctor appointments and CPAP

2008-12-03T14:52:00.007-07:00

A couple of days before Thanksgiving Emma had a follow-up appointment at PCMC (Thanks Erika for driving us)with Dr. Kang. Dr. Kang is her pulmonologist and also follows her at the sleep clinic at Primary's. We finally have gotten Emma to tolerate her CPAP mask long enough to move on to the next step. I discussed some of my concerns with him about the mask because it didn't fit her good. So, he decided to change her to a full mask which covers the mouth and nose. I feel it is a good thing especially since she is a mouth breather(It's a Ds thing). He increased her pressure a little bit and added oxygen with her CPAP. The next step is to schedule the sleep study when she handles the mask with pressure for at least 4 hours during the night. At that point we will head up to Primary's for yet another sleep study to monitor her levels during the night while on CPAP to adjust her pressure and oxygen to optimize her breathing the best they can. Emma is doing really well and is tolerating it all night she just won't wear it 2 nights in a row. A few nights ago she started to get sick of it and was fussing in the night. I decided to not push my luck that night and switched her to the oxygen cannula. As soon as that mask was off she practically dove into the pillow and actually sighed with a smile on her face. I have never seen a little girl enjoy a pillow more in my life. I wanted to cry for this little girl who is now being robbed of even soft pillow joy. On the bright side, she doesn't have to wear the tender grips(they kept her from ripping out her cannula) on her cheeks anymore. Dr. Kang also expressed his concern with how many current issues she has going on. He advised me to consider meeting with an immunologist and to look into having her immune system tested. The next morning was her yearly well child check. I discussed it with her pediatrician and he then called the immunologist at Primary's. Later in the day, her pediatrician called me back and ordered a bunch of tests that the immunologist recommended. I guess they are mainly looking at her t-cell function. I don't really know a lot about it but we went ahead and took her in for the testing. It was good timing because she always has a bunch of screening tests each year around her well child. Her thyroid is always checked and she is always screened for luekemia since kids born with Ds are at risk for hypothyroidism and leukemia. We took her into the lab the night before Thanksgiving so hopefully we will hear something back soon. We meet with Dr. Park her E.N.T to follow-up after the ear tubes this coming friday. They are going to check her hearing again and then we will see if these tubes are staying in. In a couple of weeks we are meeting with Dr. Downey to discuss her gastric emtying study and stomach issues. We are very anxious/nervous for that appointment........

Her first night with the new mask

11/26/08

You can see the oxygen tube with the green cap connected to the main tubing

We thought it was funny that she was grabbing

the tubing just like she does the nebulizer

She likes dirt

2008-11-24T15:06:00.002-07:00

On most days, Emma is just Emma to us. We don't see her physical characteristics of Ds very often. On Saturday, when she was playing in the dirt, I saw it in her. I just had to capture how cute she looked, especially how she curled up her legs! It is moments like this that are very surreal to us.

She was cooking-of course! Anyone who knows her knows that pretend cooking is her true love right now.

The Dan Peterson School rocks!

2008-11-24T13:57:00.003-07:00

Emma's annual IEP(Individualized Education Program) was held the beginning of November. It was to discuss how her disability affects her involvement and progress in the general curriculum and to go over her healthcare plan. We went over her previous goals and I found out she met several goals throughout the year! I was pleasantly surprised with her new goals already set for the year. The team went over new things I can work with her on at home. Rainbow writing, tracing(her name), play dress. I love LOVE her school, they are right on target with her. I appreciated that her teacher really knew her and knew what she needed. The new principal (Kim Wong) was fantastic and really encouraging to me. I think that the therapists there do an amazing job. I feel so much support from this school and KNOW that I made the right decision placing her there. I was concerned that she would be lacking social interaction at this school. So, I thought it was very interesting that her teacher commented to me that Emma seems to thrive being on top(She is the only one in her class that is ambulatory). It was very validating to hear that she is in the right place(at least right now) to learn and progress.

They are so lovable!

2008-11-12T22:57:00.002-07:00

I've been told countless times that people born with Down syndrome are so lovable. Unfortunately, Em is sick all the time and can't show us that side very much(sickness=high blood sugar=grouchy). Today, however, was a rare treat for me. The morning started off a little rough, she woke up with a cold and it of course was wreaking havoc on the diabetes(that is nothing new). After her nap she became so lovable with me. That hardly ever happens since I am the one usually taking care of her medical care, pushing her in home therapy or having to disicipline her during a "meltdown". I was in heaven, she was hugging and attached to me all afternoon. It amazes me how her amazing spirit manages to shine through, at times, all of the crap her body is put through. I can't believe how lucky we are to have her in our family!!!

Keep your fingers crossed that she won't get pneumonia from this cold...................

Blindsided

2008-11-02T00:00:00.003-06:00

We've had some new developments with Emma this week. We've been worried lately about Emma's nissen and whether or not it was still intact. Over the last few months, she seems to have been struggling with reflux again and has had some other symptoms that have caused concern. So, feeling like over-paranoid parents, we scheduled a check up with the doctor that performed her nissen surgery. Anytime there is concern about a nissen being intact they schedule an upper GI to see what's going on inside. During the procedure (while we pinned her down) the radiologist was telling me that he didn't think the nissen was still intact. Shortly after, we met with Dr. Downey, her surgeon. He was quite surprised by what her film showed and explained that her stomach was "HUGE" as he put it. So big he couldn't even see her nissen, which is probably why the radiologist thought it wasn't there. We don't exactly know for sure what is going on yet, but the doctor thinks there is a good chance that this might be a complication of her diabetes called gastroparesis (partial paralysis of the stomache). He thinks that maybe what we're seeing is in fact reflux, but probably caused by backed up food in her stomache and that the nissen is probably still intact and the reflux is just happening up through her nissen. He's never personally seen this on a child before, but thinks there is a good chance of it because of all of her other issues she has going on. There are other possiblities, too. It looks like there is a good chance she will be having a G-tube put in. Fortunately it won't be for feeding her, but more of a means to vent her stomache of trapped air. He put a rush on additional testing which is why we spent the afternoon of Halloween at Primary's. They did a digestion study which shows if she digests food normally. They fed her some radioactive egg and then watched it in her belly for an hour to see how quickly it passed. Supposedly, anything that comes back under 35% is normal. Hopefully we'll find out soon....

Sleeping Angel

2008-11-01T23:53:00.003-06:00

This was a really hard day for Emma. She had a lot of behavioral problems and some aggressiveness throughout the day. She was so exhausted at night that she crashed on the floor before we could get her to bed.

It's moments like this that help us remember how sweet she really is and it keeps us going.

Rough night with sugar control

2008-11-01T23:39:00.003-06:00

Unfortunately, this is what we wake up to most mornings. We have had a difficult time controlling Emma's blood sugars at night. When her sugar levels are high, her body tries to flush out the excess sugar by pulling fluids from her body. This causes several problems: risk of dehydration, lots and lots of pee (she's not potty trained yet), and (less important) who likes to change sheets every day?

Total saturation. This is why we purchased a special pee-proof pad.

Fast forward to now

2008-11-01T23:38:00.001-06:00

We are still trying to get Emma's blog caught up and include lots of info and pics from the benefit fair. But until then, we want to keep up with her current stuff.

Benefit Fair

2008-07-19T09:18:00.000-06:00

Emma was born with Down syndrome and within a year developed juvenile diabetes. Her days are filled with endless monitoring and continual struggles. On July 19th, 2008 from 10 a.m. to 4 p.m. we will be having a benefit fair at Wines Park (500 N. Center, Lehi) in behalf of Emma to help her family cope with the medical costs of major surgeries, medication, and doctor appointments that have buried the young family and will for years to come. A non-profit organization called Endless Hope Foundation has been started on behalf of Emma and donations are accepted at any Zions Bank. If you're interested in helping, please leave a comment with a way you can be reached. Thank you.

Team Emma

2008-07-03T00:29:00.003-06:00

Having a child with special needs means that you raise your baby with a whole group of people and specialists. It really stinks! We selfishly want her all to ourselves. Emma's first team members: Kids on the Move (early childhood intervention services). Therapists started coming to work with Emma at our house (during lock down) when she was 2 months old. Emma had to do physical therapy, occupational therapy, speech therapy, and classes at the KOTM center all to help her overcome her developmental delay. Kids on the Move has been awesome! Unfortunately, she was only able to stay there until she was 3 because the school district takes over at age 3.

Emma's second team members: Doctors, lots of them. Pediatrician, Pediatric Endocrynologist, Pediatric Opthamologist, Pediatric E.N.T., Pedicatric G.I., Pediatric Surgeon, etc. These are just the main ones that Emma sees on a regular basis.

Emma's third team members: Family. Everybody in the family just adores little Emma. The difficulty comes when Mom and Dad need to take a break and we can't just leave her with any babysitter. Fortunately, our family has been willing and made a lot of effort to learn her care so they can help out.

A Big Day for Emma

2006-02-01T17:58:00.001-07:00

Getting ready for surgery

February 2006. Emma underwent major surgery combining the nissen fundoplication with the removal of her tonsils and adenoids (T&A). It is very risky to perform surgery on a child so young (she was 15 mo) with diabetes, so they were able to arrange both surgeries and multiple doctors on the same day. The T&A was to take place first, followed by the nissen.

Surgery preparation consists of fasting for several hours prior to anesthesia (everybody has to do this), but this was not an easy task for a baby with diabetes. It was quite a stressful night before the surgery trying to maintain stable blood sugar because they couldn't operate without that. Has anybody heard of stable blood sugar in an infant with diabetes? NO. And without food it is even more impossible. Anyway, we did our best, but failed as her blood sugar dropped in the pre-surgery waiting room. So, they had to hook her up to an IV bag with sugar in it to help stabilize her which made the wait even longer (with a baby that hadn't eaten in hours!).

Surgery went very smooth. Recovery, however, is another story. Typical Emma style, she kept us hopping post-surgery. She went straight to the Pediatric Intensive Care Unit (PICU) as a precaution because surgery is stressful on the body, and stress makes diabetes difficult to manage. So, off she went to the PICU to be taken care of and monitored. Her diabetes went into a sky high tailspin which made her really sick on top of being miserable from the surgery. Her blood sugar was so high, it wouldn't even register on the meter (glucometer). This meant she was at risk for developing DKA again. Fortunately, she only had to spend (a long) 24 hours in the PICU, after which she improved enough to be transferred to a regular recovery room. She spent about a week in the hospital all together, which wasn't too bad, but we were ready to be out of there by the time we left.

In the regular recovery room, such a tough baby

This is how she was a lot of the week

Her recovery was very difficult because she had both surgeries at the same time, not to mention she didn't want to eat (sensitive from the T&A) which made her diabetes a nightmare to control. Her food choices were limited because she couldn't go directly back to eating solid foods after a nissen, she had to start with liquids and gradually work into solids again. The worst part, though, was that she ended up getting a stomache bug that made her want to throw up. A lot of times we take Emma to the hospital for one thing, and come out with another..... Anyway, this was the worst thing that could have happened after a nissen surgery because she couldn't throw up, but her body wanted to. It was so sad to watch her struggle through that. Nissen surgeries don't last forever, either, and they had warned us of the possibility of the surgery being ruined from prolonged stress on the site from the body trying to throw up. Mom came home with it, too, so the first few days after coming home were truly a nightmare.

Closer to going home

A few weeks later, Emma bounced back to her normal self, again showing us how tough she really is. In spite of how awful the nissen makes "the throw ups" for Emma, it has been amazing at controlling and helping her reflux.

A Niss-a-what?

2006-01-01T17:47:00.000-07:00

At the same time as the sleep study, Emma's reflux problems kind of came to a head. It started when she was a baby, and they wanted to wait for six months to see if she would outgrow it. She didn't (surprise...), so the next step was medication, which she was on for a while. In spite of the medication, she was still having problems, so they did an upper GI test and a biopsy of her esophagus. These tests helped determine that she needed to have surgery to help reduce the acid, because the medication wasn't doing enough. This surgery is called a Nissen Fundoplication (a big fancy name that means surgery to stop reflux, it also means you can't throw up your cookies anymore).

Obstructive Sleep Apnea

2005-12-23T17:36:00.000-07:00

Yep, she has it. Emma's first sleep study (polysomnography) was at the sleep clinic at PCMC on December 23, 2005. A sleep study is kind of like a slumber party at the hospital, minus the pillow fights and any hint of fun. She looked like an alien with all the wires they attached to her head and we were sure there wasn't anyway she was getting a wink of sleep looking like that. But, surprisingly, she slept and so did mom (a little), in spite of all the equipment, cables, cameras, etc. One of the things they monitor is sleep positioning. The next morning, the nurses were beside themselves because they hadn't seen anybody sleep in some of the positions she did and they didn't know how to even begin describing them. We found that quite amusing, yet knowing Emma, it wasn't surpirsing because she tends to get quite creative with her sleep positions. And, the result: Severe sleep apnea! She was already on oxygen at night when she slept, so the next step was surgery to remove her tonsils and adenoids (usually the main culprits in airway obstruction with kids).

A stomach bug ---- we mean diabetes

2005-11-18T01:33:00.000-07:00

Friday, November 18, 2005. (about 2 weeks after her first birthday) Emma got really sick and started throwing up, and by the end of the day she was very miserable. We remember she was tossing and turning alot for hours on end. By the afternoon the next day, we decided to take her to the after hours clinic because she hadn't improved any and had developed raspy breathing. We thought maybe we were dealing with croup, too. The after hours doctor listened to her lungs and said it probably was croup based on what we told him. She also had really bad thrush, but we assumed it was from the strong antibiotic she had been on post pneumonia. The doctor sent us home with a prescription for oral steroids. Something in Lisa's gut didn't feel right about the steroids, and luckily we didn't give any to Emma (steroids raise blood sugars uncontrollably high and she was showing signs of acute diabetes melitis). By Sunday morning we started thinking the bug had passed through her because she had stopped throwing up and wasn't thrashing around anymore. And she was finally sleeping for the first time in 2 days, so we let her sleep. After about an hour, we checked on her and noticed that the thrush was excessively bad and it was everywhere. Lisa tried waking her up and as she got closer to her she thought she smelled apple juice ("weird" she thought). Emma would not wake up. Her eyes opened a little bit, just enough for us to see that they were rolled back in her head and she was not responsive at all. We knew this was something more serious and immediately headed for the emergency room. When we got there, triage (emergency room check-in) took one look at her and rushed us to the back. (Just a side note, any time medical staff seem rushed and they give you all their attention, that is usually not a good sign....) Doctors came in and ordered a bunch of tests and tried to start an IV. Emma's little body was so dehydrated, though, that her blood vessels had all but collapsed and were bone dry so they had a really hard time to get an IV line in. We started getting really upset at this point, because she seemed like she had plenty of wet diapers all weekend (we had been monitoring because of the vomiting), but now they were telling us that she was dehydrated. Lisa kept saying to them "none of this makes any sense!" By some miracle, a nurse that had come down from the pediatric floor (PEDS) was able to get an IV line started on Emma in her foot. Shortly after, the preliminary results from the blood tests came back and the doctor said she probably had diabetes. Everything started making more sense at that point after they explained diabetes a little bit, but Emma's condition was extremely critical. Her PH level was extremely off (very dangerous) and her BG (blood glucose or blood sugar) was so high they had to dilute it to run it through the machine again. Just a few minutes before they admitted her to the hospital, the doctor came in and said IT, "it's official, she's a diabetic." Her blood glucose came in at a whopping 1300, the average person is diagnosed with a blood glucose of 300-400. It was one of the highest they had ever seen at that hospital. Needless to say, she was very, very sick.

DKA

Emma was also diagnosed with diabetic ketoacidosis (a life-threatening complication in patients with untreated chronic high blood glucose). Basically, she was in a diabetic coma. She had high blood glucose, high levels of ketones, and acidosis (they said it was like she had acetone running through her veins, that explains the thrashing around....). The croupy breathing was explained to us as being Kussmaul breathing, a complication of severe acidosis. Emma was critical for several days before she started turning the corner. It was a huge miracle for us to watch her come back to life, AGAIN!!!

The missed signs

2005-11-15T02:17:00.000-07:00

In hindsight, it's easy to see that all the main warning signs for type 1 diabetes were there, we simply didn't know them. It started with her leaking out of her diaper, we just thought she needed a bigger size. She ate A LOT. We thought we were really lucky to have such a good eater because a lot of children with Down syndrome have feeding issues due to sensory problems. We celebrated the fact that she ate so much. All of these started maybe a month before she was diagnosed, but after the pneumonia we probably noticed them the most but didn't think much of it. So, beware, it can set in really fast.

We try not to blame ourselves anymore, we're just now determined to tell people Emma's story in an effort to help even just 1 family or person not get to the point Emma did. Emma was not a likely candidate, she was barely 1 year old, and with all of our focus on Down syndrome and her other complications it's easy to see how we could miss it.

The 'P' word

2005-11-04T01:22:00.000-07:00

Pneumonia, we're not at all fans if you were wondering. The morning after Emma's crappy first birthday, she woke up with a fever of 103. She was lethargic (limp and really weak). We called Primary Children's Medical Center (PCMC), following post-surgery instructions, and they wanted her to come back in immediately. After testing and x-rays, she was diagnosed with pneumonia, probably a complication from her surgery the previous day. She was really sick and had to stay in the hospital that night. During the night, the alarms on her oxygen monitors kept going off. The nurse thought it could be a sign of sleep apnea, because Emma's oxygen levels only dropped when she was asleep. We were able to go home the next day, but not without oxygen for when she sleeps and a heavy duty antibiotic (that gave her thrush).

Happy Birthday! (I mean Crappy Birthday)

2005-11-03T01:03:00.000-07:00

Due to scheduling difficulties at the hospital, Emma had ear tubes put in on her first birthday (we know, we didn't think she would care, but it was hard on us). It was supposed to be a quick, in-and-out process and we would be home in a couple hours to throw a birthday party still, no big deal. Wrong!!! We were reminded again that we should plan for the unexpected with Emma. She didn't come out of the anesthesia very well, so she was observed in recovery for a long time. So, we tried to have a party for her in the recovery room that afternoon.

She loved her baby doll we gave her.

Soon after, Emma started running a fever, which meant we couldn't go home. Aaaarrrrggghhh!!! After a few more hours her fever subsided (thank you Motrin) and we were set free. Off to her party...

She still had fun....

Can you hear me now?

2005-10-01T00:58:00.000-06:00

One of the many complications associated with Down syndrome is hearing loss, both conductive and sensory. Fall 2005, we noticed Emma was showing signs of hearing problems. Testing proved that she had conductive hearing loss, which means she could hear, it was just blocked by crap in her ear. Tubes it is! Surgery #2....

Heart surgery (sort of)

2005-05-01T00:37:00.001-06:00

Emma's PDA, which normally closes after birth, never did. Therefore, in May of 2005 Emma had her first surgery to close it. They closed it with a surgical method called an intravascular coil. Basically, they enter through a vein and shoot this little coil into the heart and it ties up the hole. (now we just have to remember to tell x-ray technicians that "that metal thing in her heart" is supposed to be there...)

She wasn't too excited pre-surgery. She must have remembered the hospital...

Lock Down = Isolation

2005-04-30T00:23:00.000-06:00

This has become our family ritual during the winter months of having to protect Emma by keeping her away from germs due to her extreme susceptibility to illness. We had to be especially careful the first winter after bringing her home from the hospital. It takes a long time for the body to fully recover from sepsis. We pretty much didn't leave the house from December to May. Jeff went to work and back, that's it.

Helmet Head (a new fashion accessory)

2005-03-01T00:50:00.000-07:00

(Story in a nutshell) Emma developed torticollis which then lead to plagiocephaly and she had to have helmet therapy to help correct her "flat head." On a scale of 1-10, with 10 being the worst, Emma started at an 8 and the helmet corrected her to a 3. So, her head is still a little flat on one side (which is really only noticeable with pigtails), but we still love her. (of course!)

The first 28 days

2004-12-01T22:28:00.000-07:00

Most parents prepare for the birth of their baby with the expectation that they will be bringing their healthy baby home from the hospital within a couple days. Emma has taught us, however, that we should always expect the unexpected. She came into this world in a whirlwind of sickness and complications. Within minutes, we knew of her initial diagnosis of Down syndrome, (a.k.a. Trisomy 21) which the doctor said would have to be confirmed still by a blood test. It was quite apparent, though, from her appearance that this diagnosis was true. She had several physical charecteristics of Down syndrome which the doctor explained to us: creases in the palm of the hands, low-set ears, slightly slanted eyes, and an unusually large gap on both feet between her large toe and the one next to it. Emma was struggling to breath from the beginning, and after working on her for a few minutes, the nurse allowed Lisa to hold Emma. It was a very brief moment, because Emma's breathing quickly got worse and became very labored. Little did Lisa know that she wouldn't get to hold Emma again for almost 2 weeks.

Emma in the nursery

She was taken to the nursery and assessed there by the doctor on call. Jeff went with her while Lisa was left all alone in an empty room wondering what was happening. Things happened very quickly that first hour as she went from being assessed in the nursery to being admitted into the NICU (neonatal intensive care unit). It was very difficult for us as parents to get thrust into a new world of medical terms and acronyms that we didn't understand and it all seemed so scary. A couple hours later, Jeff took Lisa via wheelchair up to the NICU to meet with the neonatologist. He discussed with us their intial assessment of Emma. She had an infection and was still struggling to breathe. He started discussing with us in more detail how many babies with Down syndrome are born with congenital heart defects, which in turn can cause pulmonary hypertension. They felt like this was the most likely cause of her breathing struggles. He went on to talk about the possibility of intubation if her breathing didn't improve. They also scheduled an echocardiogram for the next morning to look for heart defects, which meant a high probablity of open heart surgery... It was a rough night.... The next morning ("Black Thursday" as it became known) they had already intubated Emma during the night and the echocardiogram showed no defects (lucky girl!). The x-ray of her lungs, however was not so promising. She did, in fact, have pulmonary hypertension believed to be complicated by her abnormally shaped lungs. The doctor said her lungs looked like the Liberty Bell, which became her first nickname.

Thursday morning in the NICU

By Thursday afternoon, Emma's condition continued to decline. They explained that her infection had spread throughout her body by entering the bloodstream, also known as newborn sepsis. The regular ventilator wasn't enough to sustain her breathing, so they switched her to a high frequency oscillatory ventilator. Her blood pressure was dangerously low, admist other complications. This was the first time we were faced with the possiblility of losing our newborn baby. Nothing in the world can prepare you to face that reality...

We looked like crap and felt like it, too. (the smiles were very forced...)

That night, Emma took another turn for the worse. She was "maxed out," as they called it, on life support. They were giving her the max doses of her life-sustaining medications and her only option was ECMO, a heart/lung support machine. Basically, her body was shutting down and we made the decision to move forward towards ECMO, which meant a transfer to another hospital. The closest hospital with this capability was Primary Children's Medical Center, where she was taken by LifeFlight around 5:00 a.m. Friday morning. Emma arrived at PCMC in critical, but stable, condition (a shock to all of us). A fighter was born in Emma for the first time, as her condition slowly started improving after arriving. She was still very, very sick, but ECMO was put on the back burner. PCMC became our new "home away from home." Over the next couple days, Emma swelled up like a balloon and gained 3 pounds because they were constantly giving her IV fluids to sustain a stable blood pressure.

Her second nickname became "Sumo Baby," it was so sad!

The next 3 weeks consisted of ups, downs, and more ups and downs. It was a rollercoaster ride of strained emotions combined with gradual improvements in Emma's condition. We were dealt a crash course in NICU technology and terminology. We spent our first holiday in a hospital (Thanksgiving), and Lisa finally got to hold her baby (vent tubes and all) after 12 long days.

Lisa was in heaven!

Emma continued to get better and we did eventually get to bring her home. As long as this post has been, it doesn't do this experience justice. It was a bitter-sweet experience through it all.

Emma's coming home day. Notice the outfit barely fits that we had bought prior to her birth as a "coming home" outfit. This was about the only time she wore it...

SURPRISE!

2004-11-03T17:54:00.000-07:00

Emma was born on November 3, 2004, at 10:18 p.m. She was 19" long and weighed 9 lbs 6 oz (a surprise to us, but not THE surprise). Labor and delivery were relatively smooth and quick compared to our first baby, and everything seemed to be going normal for the first couple minutes. At first glance, Lisa thought Emma's ear looked a little different, but didn't think much of it because babies come out looking funny anyway. Meanwhile, Jeff was oblivious and just content taking pictures like the one above of the nurses doing their initial cleaning in the delivery room. It seemed a little weird to Lisa that the nurse kept coming in and out of the room, each time bringing more nurses with her. After the second time of bringing in more nurses, Lisa started asking if everything was OK. The nurses response was that she just needed a little help with her breathing (her first APGAR was 7). But, after the nurse asked the doctor to come over, we really started to worry. They were all huddled around her and whispering (not a good sign). Next thing we knew, the doctor came over and sat down by us and gently broke the news to us that "we think your baby may have been born with Down syndrome." Oh, how our world changed so much in only a few minutes...