Webster's Dictionary says...

Webster's Dictionary describes the word retarded like this:

sometimes offensive : slow or limited in intellectual or emotional development or academic progress

I just finished reading a bunch of blog posts about the dominant topic of the day, which if you are not aware, it is spreading the word to get people to stop using the "R" word. Is Webster's Dictionary trying to get on the bandwagon by saying "sometimes offensive" or what message are they trying to portray? It makes me wonder?

I saw a lot of really good posts out there and I don't know if I can adequately say anything different about this topic. As I was thinking about this today it does put things into perspective for me. Many times I know I have ignorantly used the "R" word prior to having Liliana. I think having a child with Ds just magnifies the use of this word even more and has truly opened my eyes to the damage that this word can do.

Before becoming a teacher I worked for an assisted living organization called Rescare on the east side of Cleveland. I worked with many different individuals with many different diagnoses. I remember taking them out in the community and proudly going into stores and restaurants not even caring about what other people might say or what strange looks I might get. I also have a cousin that passed away several years ago who had Cerebral Palsy. He was such a great guy and was always a part of all the family events we had. We never thought of him as being any different than anyone else. So, one would think that I would literally cringe when I would slip up and use that word prior to having Liliana, but I didn't. This makes me sad.

I know that the bible clearly tells us what we should and should not say. Ephesians 4:29 says, “Let no corrupt word proceed out of your mouth, but what is good for necessary edification, that it may impart grace to the hearers." With that said I know that I now will strive to stop using that word and will pass that same message along to others so that they too can make a change. God never intended for us to use that word to describe our children. Ds children are loving, caring, kind, smart, inquisitive, athletic, compassionate, intellectual, fantastic individuals that deserve to be treated with the same respect as others. What does this mean? It means one thing and that is we need to give up the use of the "R" word because God doesn't make junk! Have a wonderful day!!!

Slow but steady wins the race!

I'm sure that many of you are wondering why I haven't posted in awhile. Well, that's because I feel like sometimes I am just repeating the same things I already talked about. As the saying goes, "No news, is good news." We did however get slammed with some bad news today from Liliana's speech therapist. She told me she has resigned and oh yeah this is her last week. Thanks for giving me a little notice. She assured me that Liliana is a top priority and that they will get her a replacement very quickly. I hope she is right because I would hate to see a huge gap between services and then Lily is the one that suffers.
She is by the way making slow but steady progress with the eating issues. She is eating some cereal, probably about 1 teaspoon and some fruit or veggies, again about a teaspoon 2 to 3 times per day. The speech therapist and the OT have given me tips to help with getting her to take food by mouth. Mainly it's using the nuk (not sure on the spelling) and or my fingers to the sides of her mouth and then push against her tongue to get her to bite down. This in turn will help her to control the movements of her tongue and it will strengthen her mouth muscles. Loads of fun!
The only other excitement I had today was taking some of the toys that Liliana got for Christmas out of their boxes so we (Gwynny and I) could take a look at them and see which ones we wanted to use to play with Lily. I know, Christmas was almost 3 months ago and I am just now taking them out of their boxes. It's that whole age appropriate thing, also the fact that she was in the hospital until February 18th, and then I thought who cares if it says 18 months on the box, and my child is only 9 months and has Ds, it makes noise, it's fun, and entertaining, what the heck! So out came Elmo Live from his box, I'm surprised he didn't have dust on him. He is soooooo funny! I put him on the floor by Lily and she just stared at him but I think she was more entertained by her sister dancing with him. What a hoot! That was ok. I definitely need to get past the stupid negative thinking that my child cannot do certain things now. I read about this all the time on other people's blogs and I know it's just stereotypes and junk that other people have decided is acceptable for a child with Ds, but so many babies out there in the blogosphere are proving those statistics wrong. I need to start setting my expectations for Liliana a lot higher than I do. Like when the OT and PT come here and tell me how wonderful she is doing I need to internalize that and rejoice in the fact that she is truly doing well. Instead, I usually say, "Really? You think so?" Stupid answer. Of course she is doing well. I just need to get to that point that I actually believe it so I can believe in my beautiful Liliana and support her no matter what happens.

Spring Fever Photo Shoot!

Friday I took my girls to Portrait Innovations to get their Spring/Easter pictures taken. They did a fantastic job as always. I thought I would share some of them with you! Enjoy!

My First Trip to the Zoo!

NO MOMMY! NO PICTURES!






Today was such a gorgeous day in Cleveland 65-70 degrees and sunny that we packed a picnic lunch and went to the zoo with my friend Cindy. Gwynny loved it and Liliana was the best baby ever! She is just sooooo good when you take her places, not that she has been very many places in her short life, but when she does she is awesome! We had a great time as you can see from the pictures. We were a little bit bummed that parts of the zoo were either still closed or under construction but it felt great to get out of the house and enjoy the sights, weather, and good company! Oh and Happy St. Patrick's Day everyone!

New week new challenges? I'm tired!

Well, here we are starting another week. I didn't post all last week because I felt like I would just be repeating myself. Things are pretty much the same as far as Lily goes. We have to make our way down to the clinic tomorrow to see Urology and Endocrynology. I hope I can find everything ok. Sometimes I feel like I'm lost in a Where's Waldo picture or something down there even though we spent three months there practically living there. Liliana sees the Urologist to make sure that her kidneys are ok since she spent so much time in the hospital on a folley catheter and also had a UTI while in there. She has to see Endocrynology for her thyroid. Her thyroid was checked while she was in the hospital but since Ds kids can have issues with their thyroid and she was having feeding issues they put her on synthroid. Hoping that maybe she will be able to get off of that stuff because it is such a pain in the rear to put through the tube. I have to crush it up and add some water to it then push it through the tube. I'm sure someone out there can relate?! I tell you the whole med thing through the NG tube is wearing me down. We had more problems with her NG tube this past week then we have ever had with it. Friday I almost had to miss my own doctor's appointment because Lily's NG tube was clogged. The stupid thing hadn't even been in for a whole week! The G-tube is starting to look so much better, let me tell you. Anyways, I had to call Bill and have him come home from work so we could just replace her NG because every time I would start up the pump after flushing her tube and repriming the pump tube and basically trying every trick in the book the pump would eventually stop and give me the error, "NO FLOW OUT!" Do you know how frustrating that is when you are just trying to feed your hungry child? It happened to us again Friday night 3 times after we got her continuous night time feed going the pump alarmed and we had to go in her room and flush the line again to get things rolling. So frustrating! I just wanted to go to sleep! After a lot of thought and coming close to throwing the pump out the window we figured out that Lily's tube mainly gets clogged after we give her her morning and evening doses of her antibiotic Bactrim. Anyone that knows what the consistency of bactrim is knows that it is thick like Children's motrin or tylenol. It's also very sticky! So I suspect that the bactrim is the culprit here. How in the world does anyone expect you to push this junk through a tiny NG tube. 5" french to be exact! Well, we have one little trick we use which is adding water to it, only like a few cc's to help dilute it enough to get it going into the tube. This still isn't a permanent fix, hoping urology takes her off that stuff! Oh! another NG blunder this weekend happened on Saturday morning when Bill calls me about 8:30Am to tell me that he can't get anything to go in and if he can't I would need to come home and help him replace the tube. Funny thing was I was at a Kiddie Closet sale and did not know my phone rang when I realized it did I was in route to go to the hair salon to get my hair cut and colored. I told him it was a good thing it happened when it did because there would have been no way I could of left the shop once she started coloring my hair. Lucky for him with some warm water, a toothpick, and a little perseverence he was able to get the job done so I didn't have to go home. So as you can see this was the most irritating part of our weekend, good thing it was balanced out by Bill getting more work done on our dining room and we were able to get out and go to my niece's second birthday party! Whew! That's why I am so tired! I'm sure I will have many more NG tales to tell in the future. Well, I better turn in for the night. Night, Night!

Sunday, Sunday!

Oh, here I sit another Sunday morning and we are not able to go to church because Liliana is an infection risk! Bummer with a capital B! It is so dreary outside today too! We were spoiled here the last two days with the warmer temperatures and hints of sunshine at times. Well, hopefully that means spring is around the corner, right? On a different note...our gastro appointment on Friday went very well. Dr. Mohr was so pleased at how good she looks! We are going to continue with the 65cc feeds 4 times a day and over the next couple of weeks try to increase it to 70cc and then her night time continuous feeds will stay the same. She also talked to me about how much Liliana is taking by mouth. I told her that I have been working with her at least 2 feeds a day with trying to get her to take at least a few teaspoons of stage 2 baby foods by mouth. She is doing ok, but not as good as she should be yet. She then told me about the dreaded thing that I did not want to hear. "Well, if she continues to struggle to eat by mouth we will have to consider putting a g-tube directly into her stomach." Whoa! Wait! No! Not my Liliana! This is what I'm saying in my head. After listening to her talk some more she told me that we will give Lily at least 3 more months to prove herself. If by June she is still not eating by mouth than she will have to come in for the g-tube. It sounds fair?! So now I am talking to Lily and whispering in her ear that she needs to eat! Over and over again I repeat those words because if some way we could avoid having to get the tube it would be great! If we have to life will not be a total bummer, actually she made some good points about how a g-tube is much easier for the child and the parents than an NG tube. It all makes perfect sense, but being a parent and wanting her to succeed makes me say, "Please Lord let her catch up and start eating like a big girl!" So for all you prayer warriors out there please pray specifically that she will start to get the hang of eating by mouth in the next 3 months and we won't have to go through another surgery, even though it won't be as big a deal as the open heart surgeries. On a different note, Bill has been painting our dining room and he finished the ceiling yesterday. Man, what a difference! He and Gwynny went to Home Depot this morning to pick up the colored paint for the walls so he can start painting today! I will have to post a before and after pick for those of you who may be interested. Working on painting and fixing up our house has been very therapeutic for us, especially Billy. Since we are stuck in our house for the time being it gives us something to be proud of and get excited about! Believe me it has been a long time coming that this place has needed a facelift! Well, hope everyone has a super Sunday and I hope the time change hasn't messed with too many people! Later!

Sisterly Love

It's hard work holding up my head!



I love my baby sista!


Well, another week home is almost coming to an end and we are definitely settled in. Gwynny has been bugging me like crazy to hold her sister so I thought it would be cute to take their pictures with their almost matching jammies. Gwynny was just happy to be able to hold her. Liliana really loves Gwynny! She knows who she is and she looks at her when she talks to her and smiles a lot. It's so adorable! We had our first OT and Speech sessions this week as well as our 3rd PT session. Liliana is doing well. Obviously she has a long ways to go, but she is making small improvements each week. She actually spent about 5 minutes on her tummy yesterday which is great considering she hates to be on her tummy! I think a lot of my insecurities about everything are starting to go away as I see how she is doing and I am beginning to feel more comfortable with her care at home. She also ate some cereal and stage 2 baby food really well when the OT person was here, which prior to that she was very sloppy and not too interested in it when I tried to get her to eat. I told her she was putting on a show for her. LOL! Isn't that always the case. The speech therapist wants me to try feeding her something cold because she said that it helps trigger the swallow reflex. She gave me some of those nasty lemon swabs to use on her lips and in her mouth to help get her to swallow. She had me put them in the freezer that way it is kind of like a mini popsicle. Yuck! Anyways, I gotta run we have to go down to main campus at the clinic today for a gastro appointment. I will let you all know how that panned out later. Chow!