Catch up...

It feels like it has been a while since I have updated on here, so I thought I would let yall know what has been going on...
First of all, I have been a busy bee working on getting a team together to walk in the Mississippi Walk for Diabetes in Oxford. It has been such a rewarding experience. We have had so much support from all over the place. I just feel so wonderful that I actually get to do something for Emily like this. I can't wait for November 1. I know that I will cry. Sometimes we just don't know how many people we have standing behind us until we turn around and look.

Second of all, we have all therapy positions filled now. For PT and OT (we finally got a PT to recommend Occupational Therapy), we now have to drive 45 minutes twice a week to get. It stinks, but I feel like this therapist actually has it together. She is the first one that has looked me in the face and told me that she didn't think it was unreasonable for me to think Emily would be walking by the time she turns three. That means a lot to me. I finally heard from the new Speech Therapist today. Didn't think that was ever going to happen...LOL She only had one more day before the deadline. Though traveling that far are going to be difficult, I'm just glad she has therapists now. I know she is going to thrive, especially with OT added in.

Emily has had pretty good blood sugars here lately...a few lows here and there, but nothing serious. This has just made everything seem about as perfect as it could be. I have a project with the Diabetes Walk, her therapy is going well, and her sugars are good. To me, life couldn't get much better...

Emily is kind of under the weather today. I hate when she is sick...makes everything seem so much worse and the medicine I have to give her for a cold makes her so drowsy. I just hope she gets over it soon.

Besides Emily being sick, everything seems to be in place for now. Good sugars, good therapy, and fun! What could be better! Here's hoping for the good times to stick around for a while...

Thoroughly aggrivated...

Well, we found out today that there is not a PT in our area that can take Emily for therapy. I am just so sick of this mess. You wouldn't think it would be so hard to get a therapist, and then much less, in our case, actually keep one. So, what are we going to do? My only option is to DRIVE her 45 minutes to the nearest therapy place once a week. With gas around here ranging anywhere from 2.20 to 2.40, that's not gonna be a very convenient thing to do. I feel like I am stuck between a rock and a hard place...either I can break my gas budget every month because nobody can find a therapist for her or she can just not get therapy...my daughter is more important than money, so I guess that's my answer. (For the first time) Wishing for age 3 to get here so we won't have to worry about this anymore...

Maybe...Hopefully...We'll see

A couple of posts ago, I thought that Emily's sugars had gotten situated again. Well, I was wrong. They went competely buzzurck!!! I couldn't get any kind of pattern out of her sugars to even make any changes. She would be low one day, and then the next day at the same time, she would be high. These are the hardest times with her Diabetes. However, today, I think I finally got it...after a week and a half of buzzurck sugars and change after change, we had a good day. It was so nice to see the meter with normal numbers on it. And, of course, Emily was Emily today. She was laughing and being silly like she always is when her sugars are normal...I love those days! We all laugh a lot because she is just full of life, and she makes the rest of us feel full of life, too. It's amazing how she can bring so much joy into our house. I feel so blessed to have been chosen to be her mommy.

Emily is still doing good with her sippy cup. I read something the other day that just almost made me sick. lol! What Emily is doing with her sippy cup right now is either laying down and holding the cup upside down and just letting it pour into her mouth or, if she is sitting up, she leans her head back and lets it pour into her mouth like that. Well, I have been trying to come up with a way to help her to know how to put her mouth around it and suck on it instead of just letting it pour into her mouth (this can get kind of messy). I went to a blog that I found the other day, and it gives advice on some special things to do with children with DS. One of the things that it said was to put babies with DS straight from the bottle to a cup with a straw so they will keep that sucking going on. I was like why the heck didn't somebody tell me this before I put her on a sippy cup and let her get to where she is now. It is different in her case because she couldn't sit up until after she was a year old, but it would have been something I would have tried before she had a chance to lose the sucking. Oh well...She is doing good for where she is right now. I'm just happy that she will actually sit up and drink out of her cup. That's better than laying down with it. She's such an amazing little girl. I just love her to death! Can't wait til tomorrow morning to see her smile again! Goodnight all! Here's hoping for good sugars to continue! Maybe...Hopefully...We'll see

One therapist after the other...

One thing that has been such a pain with Emily having DS is the therapy! It might not be so bad if we could actually keep one for any length of time. She's getting closer to 3 everyday, which will be when she loses services from the program that provides therapy for her. She still cannot walk, and this is frustrating because I don't know whether I am going to be comforatable sending her to school without being able to walk. I'm hoping that she is walking by March 12, but I always have to look at all possibilities. Anyway, here we are, 6 months until her 3rd birthday, and we have no Physical therapist again, and I just got a call two days ago about us finally getting a new Speech therapist. Here's the therapy story that we have been through...

First of all, we started out with a Special Instructor(SI) and we needed a Physical Therapist (PT). Emily, at this point in time, had not been diagnosed with Diabetes yet, so she was VERY behind. Well, the Special Instructor that we had was constantly telling me that I needed to tie Emily's legs up so she wouldn't spread them out like a frog. OMG! And, that I needed to do exercises with her to help get her stronger. Well, I never did tie her up, and, of course, because of the Diabetes, as we know now, she never did get any stronger. I think that the therapist just got fed up with the fact that I wouldn't do what she wanted me to and was tired of messing with a baby that wasn't making any progess, so she made up some stupid excuse that I won't even grace my blog with to quit coming. Meanwhile, we found a PT. She came once, did her own evaluation of Emily, and I never heard from her again. Yes, she was supposed to be coming or contacting me or doing something. She wouldn't return my calls or anything. Eventually, I got sick of it and requested a new therapist. So, once again, we have no therapists. Emily was getting pretty close to being one at this time. Finally, we got a new SI. She turned out to be wonderful. She stayed with us for about a year before her health started failing her and she had to retire. Emily learned a lot from her, and I am still in contact with her to update her when Emily does special stuff. She was replaced by another wonderful therapist. So, SI therapists are still intact as of today. Meanwhile, again, we got a new PT. He was pretty good. Of course, Emily was still not strong and couldn't sit up. Shortly after we got this new therapist, however, Emily was diagnosed with Diabetes. This changed everything. She got stronger and actually started responding to the treatment that the PT was giving her. But, of course, problems arose. This PT was only an Assistant PT, which meant that he had to have someone that was over him to come about once a month and check up on things. Well, his supervisor got another job, and he was left without one. One could not be found...We lost him. The only therapist that was available was another assistant, and his supervisor was none other than the one that had come once and then blown us off at first. So, I was like, well I will give her another chance. So, I waited, and waited, and waited for about a week. Then, I called the service coordinator and told her that I wanted nothing else ever to do with that therapist again. We decided that it would probably be easier to find a therapist at a clinic instead of having them come to the house. Meanwhile, we have a Speech Therapist (ST) now. She is only able to come once a month. This doesn't work very well because Emily needed more, and she just couldn't do it. So, we found a PT at a clinic. There was also a ST at the clinic that could take Emily once a week as well. So, we thought we finally had it whipped. Note that Emily is over 2 years old by this time. Well, we start with these new therapists. It becomes obvious after a while that they were out quite a bit for one reason or another. It got to the point that Emily was missing therapy more than she was getting it. Then, the clinic was going to move into another building. I was told by the therapists that they would be closed for a few weeks to move...understandable, but still leaving Emily without any therapy. So, I didn't go to therapy the next week. However, my SI, who works out of the same clinic, came to the house. She told me that they actually had not been able to move that week. A week that was completely wasted because the therapists at the clinic had not bothered to call me and let me know this so we could come to therapy. Getting closer to 3 everyday...So, the time came to finally actually move. They were to be closed for 2 weeks...again. Emily had already gotten to the point that she didn't like them because she didn't see them enough. So, I had already put in another call to the coordinator asking for yet another SI and PT. It has been 3 weeks, and the clinic is still not open for therapy. The SI is probably going to come next week anyway, bless her heart, because she knows her clients need their therapy. As I said, we just got a call a couple of days ago letting us know that a ST should be calling us soon to set up a time to meet. However, the coordinator has had no luck finding a new PT yet. Once again, getting closer to 3 everyday...

Emily has been doing pretty well on her own. Within the month that we have not been having therapy at all, she has learned to pull up and say a few short words. I would just love to actually get a good, reliable therapist for once this time that could maybe give her the therapy she needs to get going a little faster and be walking by the time she is 3 and maybe even saying some more words as well. Frustrating...Hoping for better therapists!

Good Days...

Today, surprisingly, has been better than yesterday, in ways. Emily's sugars have already reacted to the changes that I have started making, and for once, it seems to have worked immediately. Thank God for this. She is in her room right now (lol) yelling into her mirror.

The last few weeks have been an amazing time to be around Emily and watch her learn and grow. We have gone several months without seeing any kind of physical progress at all from her. Finally, a few weeks ago, she pulled up to the table in the living room. I could have jumped through the ceiling. Emily is the type of baby that likes LOTS of praise when she does something, and the more you give her, the more she will do. So, of course, I let her know how happy I was that she was standing up. With her being 2 1/2 now, this was something I had been looking forward to for a long time. A few days later, I watched her pull up again, but she was too far back from the table. So, she actually moved her feet forward to stand straight up. Anotherbig thing for her because she has never wanted to alternate. She scoots for crawling, so her therapist has been worried about that. But, lol, I guess Emily did it when she was ready.

Another thing that she has just miraculously taken to is actually sitting up at the table drinking out of her sippy cup. I guess because of the fact that she couldn't even sit up until after she was a year old (because of the Diabetes), she just learned to drink while she was laying down. This has become a problem, and with her being as stubourn as she is, it hasn't been an easy fix. I have just been patient with her and believed that in her own time she would learn how to do it. She's that type of baby, too. She WILL NOT do ANYTHING unless she's ready to do it. lol! But, the other day, we were sitting at the table, and just to try it, I handed her the sippy cup, and she just lifted it up and drunk out of it. I was shocked, to say the least, but as with the pulling up, I let her know exactly how proud I was. Daddy, her big sister, Brooklyn, and little sister, Addalyn did, too. That, she absolutely loved. So, she did it again. She still likes to lay down and drink most of the time, but while we are at the table, she can drink it now. I know that one day this will be all she does. I guess it's kind of like walking...when they first start out they only take a few steps...then, all of the sudden, that's all they are doing.

She has also started saying more words here lately. (We have had a very productive few weeks!) She can say Mama and Dada pretty clear now with just a little coaxing. She also knows how to say NO very clearly! haha! That's fun to hear sometimes. I know that might sound crazy to say that you like hearing your child say NO to you, but you would just have to know her.

It's nowhere near easy being the mom of a child that has special needs, but it is so rewarding to see all the hard work you put into helping them pay off. I love my Emily more than words can say, and I wouldn't take anything for her just the way she is. Hoping to have more good updates soon!

Perfection gone...

For the last couple of weeks, Emily has had near perfect bloodsugars. This is a real feat for a child her age with Diabetes. I work endlessly trying to get these results. I love it when she has these perfect days because it seems that she can just be Emily...She doesn't feel tired and ill because her sugar is high, and she just seems to play more when her sugar is good. We haven't made any changes for probably 2 weeks straight, and it was wonderful. However, as usual, I knew that it would have to come to an end eventually because that is just how it is. Thursday of this week, we had our first bad sugar in two weeks...and it continued throughout that day and through yesterday as well, and it has filtered into today. I was hoping that maybe it would kick back to normal this morning, but the meter didn't agree with me. I can tell that she feels bad, and I think that is the hardest thing about this...I can look at her and know that she feels bad, but there's not a thing I can do about it if the insulin that I give her isn't enough...I just have to wait until time to make another change...and if that doesn't work, wait until time to make the next one. I know eventually I will get it back to normal because that is what I do, but there are days that I just wish she didn't have to deal with all this. Today is one of those days...Here's hoping for a brighter tomorrow!

Starting out...

This is my first blog, so I will begin this experience by telling Emily's story. I had a pretty normal pregnancy with her. The only problem we had was when my "Triple Screen" came back with a possibility of her having Downs Syndrome. I was devestated, but I knew, regardless, I would love her. We went and had a special sonogram done, which cameback negative. So, I was relieved. Emily entered into our lives on March 12, 2007. Doctor's looked her over, and she was perfectly normal. The first four months of her life were a whirlwind in ways. She had sinus trouble from the beginning, and was admitted into the hospital when she was two months old from a (still) unknown cause. From that moment on, I begin to see changes in her. She wasn't the lol appy little baby that I had once had. She was ill all the time and, instead of gaining strength, she seemed to be losing it. At four months, she was diagnosed with Downs Syndrome. Around this time, I found out I was pregnant with our third child. This was a very rough time for me, but I survived. The next several months were filled with getting used to having a child with DS, finding therapists, and for me, getting ready to have another baby. Emily continued to deteriorate, and the more she went down, the more I went down. I was about a week and a half away from having the baby when Emily got sick. I spent two days nursing her, giving her everything I could to try to make her feel better, but nothing worked. She just kept getting worse. Two days later, we took her to the hospital, where once, she stopped breathing. We found out that day that she had Type 1 Diabetes, and her sugar was 1500. It was just a miracle that she was even alive. The next few days we were sent to Birmingham where we learned to give shots, check bloodsugars, etc. It was, by far, the hardest 3 days of my life. We have lived with Type 1 Diabetes now for over a year and a half. It doesn't necessarily get any easier, but I am thankful that she is still here. After her diagnosis, she began to regain strength in her muscles. Today, she is still severely behind physically, but making progress everyday. I am so proud to be her mommy!