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! :)

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!

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!

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.

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!

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!

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!

Much better...

Yesterday, my husband and I went to Emily's determination of services meeting. It went great! I was so glad to finally see people that I could believe would take care of my daughter and give her what she needs while she is in their care. We also finally got to meet the actual Special Ed director yesterday. The lady that has been handling our case has not been on my good list AT ALL. So glad I don't have to work with her anymore. The therapists were present, along with the preschool teacher, and the principal of the school. It was just great to meet all these people and to see the determined look in their eyes. We will be having another meeting in July because of her Diabetes. We will be looking more closely at what all will need to be done with all of that. Hopefully by then Emily will be on a pump. I discussed this with her doctor at her last visit, and he seemed confident that she would do fine with a pump. OMG this would change our lives. No more shots. May 11 is the appointment, and I am so ready for it. She should be on a saline drip through the pump for a little while to get used to doing the placement and to make sure everything is functioning correctly. Then, I pray to God that it can just be a smooth transition. I'm ready for simple.

Evals...

Well, the therapy evaluations have started....for school as well as the next few months before she goes into school. Emily and I went to the school and met with the Speech Therapist that will be working with her when she goes to school in August...LOVE HER! :) She did a LLOOONNNGGG evaluation on her, asking all sorts of questions and getting Emily to do a few things, and we're still not done. We will probably have to meet once more to get the rest of it done. It's coming down to the Early Intervention deadline, and I'm getting slightly worried that they are not going to make it. It's no skin off my nose because she will not be going to school until the Fall, but they have a very strict deadline that is about 2 1/2 weeks away, when she turns 3. In that 2 1/2 weeks, we have to finish the evals and have a meeting with the therapist, the Sp.Ed director, and the Early Intervention director, on top of them having to have ALL their paperwork in. It seems like to me that it's not enough time, especially considering there's only two days a week that I will be able to meet with them...hmm...Anyways, she will also be having a Speech evaluation at the clinic that she has been getting her PT and OT from next Friday. We're doing this so there will not be any lapse in service when she turns 3 and cannot get therapy through EI anymore. I'm fairly excited about this one. These therapists at this clinic really have their priorities straight, and I love them all to death. I am really happy that Emily is going to get Speech therapy from there for the next few months. Well, I hope everyone has a great weekend! I'm planning a shopping trip with my oldest tomorrow. Growing growing growing!

The Little Engine That Could...

Sometimes this is what I feel like...lol! Just constantly going uphill, move back down a little, and then just keep chugging upward. Eventually, I know we will get to the top, but it sure is tiring. Emily is continuing (at her own pace) to progress. She's had another sinus infection this week (the second in the last two months), so we didn't have speech therapy yesterday. The last week, however, she did good. She continued to use her signs and is starting to make some new sounds. She did something big tonight, though, which is the big reason I am writing this blog. She ate all of her mashed potatoes with a spoon! Yey! This is such a big step for her. She has always just been contented to use her hands, and when Emily is content doing something, it is sooo hard to get her to do something different. I loved it! She just amazes me all the time. I love her so much, and sometimes, I have days that I just curl up on the couch or in the bed when I get free time, and I just cry because that's all I know to do. Some days, everything just hurts. But, I always think about how close we came to losing her and I thank God for letting us keep her, and I know that I would take the hurt over and over and over again to keep her here with me where I can see that sweet smile every day.

We're hoping to start a feeding class that her Speech Therapist recommended sometime soon. It's supposed to deal with some sensory issues, and she has developed some pretty severe ones, which is why it's a big deal that she ate with a spoon tonight. I'm pretty excited about it. It's a 12 week program that deals with eating, drinking, etc.

I am also fixing to start fundraising for TEAM EMILY for the Diabetes Walk in May. It's going to be closer to us this go around than it was back in November. I'm super excited about it. I'm hoping for a bigger team and more money to give the Diabetes Foundation of MS. It's a lot of work, but it's fun and so worth it when I think about possibly having a cure for Type 1 Diabetes someday...oh what a day that would be! :)

Hope everyone has a great weekend! Enjoy the snow if you are getting any! We might be...I'm ready for Spring myself :)

Busy Busy Busy!...

Hello to you all! I hope all is well with everybody. Things around here have been a little busy, and it seems that they are fixing to get a little busier...this week at least. A few updates on Emily being busy learning first of all. She is doing great right now! Her Speech Therapist has been doing a great job experimenting and trying to figure out how Emily learns the best, and she has learned that Emily needs to "see" things in order to learn them. In other words, we are learning some signs. It seems that when she sees us signing the word on top of saying the word, something registers, and she just gets it! It's amazing! :) We have also been trying to learn some songs that involve some motions about body parts such as "Head, shoulders, knees and toes" and "The Wheels on the Bus". She's been doing "The Wheels on the Bus" motions for a while, but now, she's finally starting to sing the words as well. I just love watching her sign a word while she says it. It's just the sweetest thing! She's also starting to point at stuff while someone is counting, if that makes any sense. LOL It's one of those things you would almost have to see. Basically, the therapist had a counting book that she was reading to her, and, as she was counting, Emily started to point at the individual things on the page as she counted. To both of us, this was pretty amazing because we had not worked with her at all with numbers or counting or anything like that. It just appears that she figured it out on her own, maybe with the help of a big sister or something, as well :). All of this will play a big part in tomorrow, as well, I figure. I'm taking Emily to be evaluated for school tomorrow to see what services they think she will need and how often. This is the first big step in getting her into school. Since we have decided to wait until August to let her go, we still have quite a few more months. However, there's so much to be done from getting this eval done to start getting Emily to wear her Medic Alert bracelet (which she did this morning...it was so cute with the little lady bugs! I picked that one because she has always been my little stinker bug, so it just fit :) ) to getting everybody at the school that will be in contact with her educated about Diabetes. It all starts this week! Busy Busy Busy!

School Woes...

Ugh! Will this ever end? Will I ever be completely comforatable with every aspect of sending Emily to school? I met with the pre-k teacher today and the school nurse, asked some questions, and have come to this conclusion...I don't think I'm ever gonna be comforatable with this. There's just so much more to think about with the Diabetes, and I want somebody to look me in the eye and tell me that they are gonna take care of my baby!!! All I have gotten so far is a bunch of hesitant answers because nobody has ever had to deal with the Downs Syndrome and the Diabetes. At least one question that has been nagging at me the last few weeks has been answered...send her in March or wait til the beginning of the next school year in August. The answer seems a bit easy now...August. I don't like all the hesitation, and I feel that I need more time to pound all this stuff into these people's heads! I think it will just be easier on everybody if we wait til August...including Emily. She was sooo tiny compared to all the other kids in that classroom...made me a little nervous about that, too. But, August is far enough away that I think she will be walking and doing some other things that I think she needs to be doing before she goes to school. That's just the way it is. Now, the daunting task of getting her therapy worked out to where she can still get it after she turns 3. Probably lots of paperwork, etc. Oh joy! I guess I just wish it was easier. Who doesn't wish their life was a little easier and less complicated? Have a great weekend!

The Snow Days!...

Well, the winter freeze that has swept across the South has froze up our area. The schools have been shut down the last two days because of icy roads. It may not be a whole lot of snow and ice compared to what some of yall see (Sara :) ), but it's a rare thing that we get two days of schools shut down and any kind of accumulation on the ground. It's not supposed to get back up above freezing until Monday, so this is a little uncomforatable for all of us southerners down here. We're getting a little chilly! LOL We love the snow, though, because we hardly ever see it. So, I thought I would share some of our snow with yall today.

A step in the right direction...quite literally!

Today, I got to see Emily getting even closer to doing something that I have waited for almost two years for her to do...she's ALMOST walking. A step in the right direction...I turned around today and witnessed her standing on her hands and feet, but then...all of the sudden...she moved one hand forward and then a foot...then she moved the other hand and foot. She took a couple of steps before she sat down and started grinning probably because of the look that was on my face. She can always tell when I am super proud of her. :) Then, this afternoon, I was sitting here at my computer, and she started doing it again, except this time, she walked a complete circle around the living room...TWICE! LOL! It was so funny and cute, but it just makes me know that she is on her way. LOL And as I am sitting here typing, she is continuing to do it! It would be such a blessing to see her walk and to know that she has come that far. That's the next big milestone we are waiting on, and I know it's just around the corner.

Sitting still...

Not too awful much has changed since my last post. I'm still trying to decide what is best for Emily concerning her schooling. I'm leaning more towards at least waiting until the Fall to send her...maybe that will give her enough time to start walking and possibly be drinking from a straw...just a couple of things that would help TREMENDOUSLY. I know the straw thing seems kind of silly, but if she can drink from a straw, then she can drink out of a juice box when her sugar gets low, which is a whole lot simpler than having to make her eat applesauce. I'm planning on visiting the preschool here in a couple of weeks to talk to the teacher about all of this and just see what she thinks about it. That might make me feel better if she can explain to me how things would go and how comforatable she would be with having to do all of this. Other than that, we have a pretty busy week ahead of us. This time of the year is when all the government agencies want a little of my time to re-evaluate our situation for Medicaid, SSI, and WIC. Medicaid's appointment was this past Wednesday, but the other two are both this week. I have that on top of Emily's eye doctor appointment on Monday and therapy on Wednesday, Thursday, and Friday morning. After that, I suppose things will settle for a few weeks while we continue to rack our brains over school stuff. Hope everybody's year has started off good and everybody has a good weekend!