Emily

Emily
Emily in her TEAM EMILY shirt for the Diabetes Walk

Friday, September 10, 2010

Back...:)

Well, I have been out of the blogging loop for a while now. So, I guess I have some updating to do. First, Emily is on her pump now!! yay! No more shots!! It has been the most wonderful thing for us and her. Her blood sugars have leveled out even more than they were, and I really did not know that was possible :) She has also started school, and is LOVING IT! I was so concerned about whether the school was going to be willing to accommodate to her like I wanted them to, but they have gone above and beyond. Her teacher is awesome along with her therapists. EVERYBODY at the school loves her, too! The principal, assistant principal, and anybody else that wants to I guess, just comes down there at liberty just to see her :) It's so sweet! The pump has made this transition so much easier. All they have to do is check sugar and press a few buttons when she eats, and they do it well! I couldn't be happier. Another thing, Emily is still not walking. Yes, she's 3 and getting closer to 4 every day, but still not walking. Her doctor became concerned about this here recently and we seen an orthopedist. A couple of months later, we got her some ankle braces to try to give her more support. Slowly but surely, we started to see a little difference, but not much. Finally our real orthopedic appointment came where they would do xrays to really try to see if there was something wrong. They did every xray from the neck down, and didn't find anything. It was wonderful to actually take her to the doctor and them tell me nothing was wrong. I was pleasantly surprised because I really didn't know what they were going to tell me when I took her. So, continuing physical therapy is what she needs. It's kind of aggravating to have to continue something we've been doing the past 3 years almost with no results, but I know one day that she will walk, and that's enough to keep me going. Just over the last couple of weeks, she has started standing on her own without holding on to anything. I believe school has really helped in this area, too. She's getting consistent therapy along with the help of her teacher, who does a lot of stuff with her in the classroom when the therapists aren't there. I couldn't have been happier when I saw her do this the first time :) Other than that, she's doing great! Since she has started school, I am enjoying staying at home with my youngest baby, too. She's never really had the baby time she needed because I have always been so busy with Emily, so we're catching up :) I hope every one has a great weekend, and I hope to be posting more soon! :)

Monday, April 26, 2010

Emily's TV Debut...

Yes, Emily had her first television interview today (of course, it was me who did most of the talking). The Walk for Diabetes in Tupelo, MS is coming up this Saturday, and Emily and I were invited onto our local TV station's 12:00 news to help promote the walk. It was a lot of fun, and a very sweet memory that I will share with my little Emily. She was sooo cute! She took the whole show, of course, when she decided that she did not want her pacifier anymore, and literally chunked it across the stage. lol! Everybody just thought that was the cutest thing. I haven't watched it yet. Had my DVR set, but I am holding off to watch it for a little while. hehe Have a great week!

Saturday, April 17, 2010

Surgery went well...

Thankfully, the adenoidectomy went well. It was a very loooong morning, though. We got up early Wednesday morning, arrived at the surgery center around 7:30. She wasn't allowed to eat anything all morning, so that was a concern right there because of her Diabetes. First thing, we checked her sugar, and it was low. So we got that fixed, and then waited until they were ready to do the surgery. I can't even tell you how nervous I was. This was a simple procedure, but I couldn't help but be worried I guess. It didn't take them very long to get it done and let us know that she had done very well, and that her adenoids had been very big and really had needed taken out. We stayed there for a little while longer that afternoon until she was able to drink well, then came home. This is where the problems started...
We were told to feed her soft foods for two weeks after the surgery. So, finding things that she could eat was one thing, then getting her to eat them was another. Her sugars were completely out of control...one minute it would be low, and the next, high. I've never seen her sugar do the things that it has done over the last couple of days. She threw up a couple of times, which was expected. I just felt so sorry for her. Today, however, she seems to be getting back to her old self. She's playing, her sugars have actually been normal all day, she's starting to eat better, and I can tell a definate difference in her breathing. It's so nice not to have to listen to her struggling to breathe and snorting all the time. I hope this will take care of the chronic sinus infections, as well.
Anyway, there's the update. Hope everyone has a great weekend!

Monday, April 12, 2010

Hello "Getting into everything!!!"...Goodbye adanoids...

I know it has been so long since I have gotten on here and wrote anything. Let me tell you...it has just been super busy. The Walk for Diabetes is coming up, and for some reason, it just seems to take up a lot of my time fundraising and getting our team together. So far, we have over fourty walkers on our team, and I personally have raised over a thousand dollars for the Diabetes Foundation of MS. This is such a good organization. They helped us out so much when we came home with Emily after she was diagnosed with Diabetes. I love doing this.
First of all, let's talk about Hello "Getting into everything!!". Emily has started cruising...EVERYWHERE! It's so cute! There's not anywhere in this house that she won't go as long as she has something to hold on to. It's precious watching her walk around stuff. I'm still waiting on the day that she just takes off on here own, and I really do believe it will be soon :) Since she has started cruising everywhere, she has been getting into everything, as well. She's standing up at the kitchen sink putting stuff in it...I will try to get a snapshot of this sometime if I can get it quick enough...she's pushing buttons on our stereo system, and well she's just EVERYWHERE! I get tickled at myself sometimes because I know that if my other two kids had done some of the stuff that she does, I wouldn't have laughed, but with her...I don't know. It's almost like I'm just so happy that she is doing it that I can't help but smile and laugh at her! We were at church yesterday morning, and she has gotten to where she will stand up and hold on to the bench in front of us while we are singing. Then yesterday, she just let go and stood there on her own and clapped! It was soooo precious! I just smiled! I know everybody had to be wondering what I was smiling so big for. My husband even saw it from the drumset and asked me what she did...lol He knew it had to be her that provoked a smile like that of pure and utter joy!
Ok...now to "Goodbye adanoids"...this Wednesday, Emily will have her adanoids taken out. I'm hoping this will help her with all these sinus infections that she has been having. The doctor agreed that something needed to be done, so...we scheduled it as quickly as possible. She has had tubes done before, but this surgery is a little more of a big deal, especially with the Diabetes, because she won't be able to eat anything all morning long. This concerns me, but I have been assured that they will take every precaution necessary to make sure that she is ok. I know it's gonna be a very nerve racking morning. It's not that I don't trust them, but I sure would like to be able to see her a whole lot sooner than I will be able to. I won't be able to see her at all while she is in recovery. I'm attached to my little Emily, but...sometimes we have to do things that are a little uncomforatable to get the results that we want for the long run. I'll update on how everything went. Hope everyone has a good week.

Thursday, April 1, 2010

Round and round we go!...

These last few weeks have been such a whirlwind! It seems like there is always something that needs to be done! This week alone, Emily had two doctor visits. One was in Memphis, a couple of hours away, and the other was supposed to be yesterday, but got cancelled...a whole other story. The visit in Memphis was her Cardiologist. Everything was fine, thank goodness. He could still hear the heart murmer, but he said that it still wasn't big enough to cause any real problems. We don't have to go back to visit him for 2 years! Yay!! The visit that was supposed to be yesterday was with the Orthopedic doctor that I mentioned in my last post. It got cancelled yesterday moring due to the doctor having a medical emergency with his Father. Thankfully, they are going to reschedule another clinic day in Tupelo, and we still will not have to drive to Louisiana. I was really hoping to get that doctor visit over with now because I really think she needs to see this particular doctor and because her Medicaid doctor visits will be all taken up by the time we get to reschedule. I can deal with this pretty easily (with a little bit of arguing a little with the insurance people) in our area, but I am quite worried about not having any visits coming into this one because the doctor is from Louisiana. We have to deal with running out of doctor visits EVERY YEAR because she has to see so many doctors and there's just not enough visits to cover everything. I tried to be as proactive as I could this year by trying to get in the required paperwork from each doctor that she sees to get more visits, but I wasn't planning on seeing a new doctor. So, now, I have to worry about that and what I need to do about it. I guess I probably just need to get on the phone and call somebody to see what I need to do. I just get so tired of doing this stuff sometimes...I think this is where most of my stress comes from. It's not just from the Diabetes or the Downs Syndrome...it's having to deal with all the doctors and therapists and Medicaid and pharmacies!!
So, on to another issue...the Walk for Diabetes. This is always a pretty stressful time trying to get everything together, get all my fundraisers together, and find walkers. Well, this year it has just been a battle from the beginning. For one, my top fundraiser from last year that raised over a thousand dollars just decided that she didn't want to help this time. Just because she didn't want to! It wouldn't be so bad, but she promised me that she would help, so I was depending on that. On top of having to do pretty much all of the fundraising by myself, I am having to figure out how to actually do fundraisers. Last year we did all of them at our church, but we have another big church fundraiser going on now, so the walk fundraisers are pretty much having to be done outside. This means I have to get people to volunteer to help man the tables for the bake sales that we are having and get people to bake stuff and get it to me before the bake sale. I know this doesn't seem to be such a big deal, however, I am also having to deal with the added pressure that I am actually helping the Diabetes Foundation of Mississippi promote this particular walk. They were so impressed with us when we went in November that they wanted me to help, and I was sooo happy to do this because this is my passion now. However, I feel like I need to raise a lot of money and bring a lot of people to the walk because if I am promoting it, then I should show up with as much money and as many people as possible. Am I rambling? I think I am just because I need to get all this stuff off my chest. It's just been a stressful few weeks. I'm hoping things are getting close to slowing down a little. We're getting closer to May 11 when Emily will hopefully be going on an insulin pump, and I am so ready for that. Life, I believe, will be a little closer to normal with her using that, and man could we use a little normalcy.
I hope everyone has a great weekend! I have a friend of mine and her little boy coming over to visit tomorrow (kind of like a playdate). I'm sure Brooklyn will love having a kid her age to play with around the house. Other than that, it will just be a normal weekend. Hopefully getting some rest!

Thursday, March 11, 2010

Busy to Busier...

Today was Emily and my youngest daughter, Addalyn's doctor's appointment. Boy did they lay it on today! There's nothing bad going on necessarily, it's just that we are fixing to get a little busier.
First off, let's talk about Addalyn. I haven't talked much about Addalyn because this blog is just mainly about Emily. Addalyn has always just been pretty down to earth and normal. No problems or issues with anything. Well, today, the doctor suggested that we have her evaluated for Speech Therapy. Normally, this wouldn't be a big deal, and it's still not really a big deal. She will be evaluated and treated, if need be, at the same place that Emily gets her ST hopefully at the same time on the same day. However, the problem comes when Emily goes to school. Addalyn does talk pretty good. She talks ALOT! Mostly jibberish, which is the reason for this eval. But, am I really going to want to make a 45 minute trip once a week to take her to ST when I'm really not convinced that she needs it? I don't know. I guess maybe I was just looking forward to a "no therapy" time after Emily's therapy starts at school. But, I will do whatever she needs me to do...but I will also make sure that it is absolutely necessary.
Now to Emily. Her doctor is always talking about how good she looks, and I love that. She just brags on her so much. Everything was pretty much the same today. She did, however, mention that Emily's feet were turning in. For this, she suggested that we see an Orthopedic doctor. This would normally be fine...lol...I said that once up in Addalyn's paragraph, too. However, there are only two Orthopedic doctors around. One is in Memphis. This clinic does not take Medicaid, which pretty much marks them off, unless her doctor can pull some strings, which she said she was going to try. The other is in South Louisiana at Shriner's Hospital...we live in Northeast Mississippi. My eyes just bugged out when she told me this. It would probably take us 6 to 7 hours to get to this hospital, if I had my guess. However, (another loop), one of the doctors from Shriner's comes to our area every once in a while. So, yet again, she said she would try to get him to see her here instead of us having to drive all the way to Louisiana. Crossing my fingers for that one...that would be an insanely long trip for all of us. The second thing that is probably going to cause a rough few days is seeing the ENT for her nose. She's always had trouble with her nose and breathing out of it since she was born. Here lately, though, just having a little trouble breathing out of her nose has turned into sinus infection after sinus infection. So, she is recommending that we see her ENT about getting her adanoids taken out. I am fine with this because I want the sinus infections to stop as well as wanting her to be able to breath normally. This is going to be a little more difficult than when she got her tubes put in. I know this because my dad had a similar surgery not too long ago. He has always had issues with his nose just like Emily. I'm just hoping this goes off smoothly. We have about a month to wait on the appointment, so we have time to get ready for it. I'm probably going to push pretty hard for it because I know that nasal sprays and antibiotics have not ever worked for her. I'm just ready for it to stop, and I know she is, too.
Other than those issues, everything went off pretty good. I had to make my oldest daughter, Brooklyn's appointment today for later in June to get her school shots done. I figure that will be a very interesting day. She does not like shots at all. I guess I will have to plan something special for us that day. Anyway, hope everyone has a great weekend!

Wednesday, March 10, 2010

Good Stuff and Doctor Visit....

I've been so excited all week long! This is Emily's last week to get therapy through EI! Next week, therapy will only be ONE DAY A WEEK!!! I know this may sound bad, but for as long as I can think back, we have been getting therapy Wednesday, Thursday, and Friday, which means that we couldn't do anything else on those three days. I'm so ready to be able to say, "Yeah! I can do that Thursday!". lol Emily has also started crawling this last couple of weeks! She is soooo cute! She usually just scoots around on her bottom, but her PT's have been working with her every week on trying to get her to actually crawl. They said that it would help with the walking, too, because she would be learning to alternate her legs. It has just been very exciting to see her start to do this. Also, she has started drinking milk again...whew! I haven't been able to get her to drink milk probably since I took her off of formula. She just hasn't liked it. I've always worried about her calcium levels because of this. I try to give her stuff with calcium in it every day, but some days, it just doesn't happen. She just seems to be growing up on me, and in reality, she is. She will be 3 on Friday. That's hard to believe. It doesn't seem like that much time has gone by since she was born, but so much has happened in that 3 years. Life has completely changed! It just seems like yesterday that I was holding the most beautiful baby girl I had ever seen, and now I am holding the most beautiful little girl I have ever seen. I love looking into those big blue eyes of hers and seeing that smile. I wouldn't take the world for it.

On to another note...this Thursday, we have a doctor's visit. It's just a routine checkup for the most part, but we will also be doing blood work. I dread these appointments so much. She has veins like me...nothing to them. It's so hard to get the blood they need for the complete metabolic tests. For the past year, we have just been having to do a finger stick because they didn't need that much blood, but once a year, I figure we will have to do the complete workup. It's hard on her, and hard on me, as well. I just pray for the nurse to be able to find a good vein. If anybody can, this nurse can. She's the only one that can get blood from Emily, even in the worst situations (like when she got diagnosed with Diabetes and was severely dehydrated). I'm also considering having an extra test done...one that I heard about when Emily had just been diagnosed with Diabetes, but was never done because we quit seeing the hospital doctors shortly after, and it has never been brought up again. Emily was diagnosed at 11 months, and it is a rare thing for a child to be diagnosed that young. There have been some studies recently, and some children have been found to have what they call Genetic Diabetes. If they have this, then they can take their insulin orally...not through a shot. This would just be wonderful! I've never pursued it after leaving the hospital because we've always just been going in to get a small amount of blood, but...no harm in asking if while they are getting a lot anyway, if they can just get a little more to do this test. I'm not keeping my fingers crossed or anything because, just like being diagnosed at a young age like that, it's also a rare thing for them to actually have the genetic kind of Diabetes, but it's worth a shot...no pun intended. Hope everyone has a great day!