Our Little Bouncing Princess

Playtime!

Gwynny and Lily playing on the floor. Gwynny is the queen of junk and you can see all the junk she carries around in the one picture.

Top 5 things that men and women want out of a committed relationship

Yesterday our pastor preached about friends specifically lovers. Some of you may say, "Why did he talk about that in church?" Well, because God has some specific things to say about committed relationships in the bible. The book of the Bible he specifically focused on was The Song of Solomon. I won't go into details about the sermon but he did make reference to the top 5 things that men and women want from a committed relationship. I can't remember the author's first name but his last name was Haley. The list was very interesting to me and as he said you may find things on the men's list that apply better to your relationship and vice versa, but I would say that this guy pretty much hit the nail on the head. Here's the lists.

His Needs
1. Sexual Fulfillment (Does that surprise anyone?)
2. Recreational Companionship
3. Attractive Spouse
4. Domestic Support
5. Admiration

Her Needs
1. Affection
2. Conversation
3. Honesty and Openness
4. Financial Support
5. Family Commitment

Just thought I would post this because it really made me think if I have been meeting the needs of my husband lately. It's easy to forget about your relationship with your spouse when you are sooooo busy taking care of your kids especially one with special needs. It was very ironic that he and I were having a conversation about how we never have time for ourselves anymore. We never go out on any date nights anymore because everyone is too afraid to take care of Liliana because she has an NG tube. Then we go to church on Sunday and our pastor preached about this. We also talked about negativity in our relationship and that we need to support each other instead of tear each other down. It's all about making deposits in the bank of love/relationships instead of constantly making withdrawals. My challenge is to try and think before I speak and try to find ways to keep the spark in our relationship so we can be a strong couple and family. Let's face it...if Bill and I hadn't met there wouldn't have been any Gwyneth or Liliana and we love them both very, very much! I'm thankful for that!

Another Little Tidbit of Info.

Hey Everyone! Hope everyone is enjoying their weekend! The weather here in Cleveland is gorgeous! I mean gorgeous! Went out to another baby sale this morning and picked up some cute summer clothes for Liliana. Went to hair salon afterwards and got my do all freshened up with color and a cut. Ahhhh! Feels soooo much better. Now I am trying to get myself motivated to clean, but it is sooooo stinking hot in my house even with the windows open and the fans on that I don't feel like doing anything but sitting around enjoying the weather! Well, as I was sitting here I realized that I forgot to post about Lily's eye appointment on Thursday so here it goes.

Thursday afternoon Liliana had an eye exam with Dr. Traboulsi at the Cleveland Clinic. He is supposed to be one of the best in peds opthamology. We arrived at 12:45 on schedule and had to wait in the waiting area, fill out paperwork, the usual stuff. I also had to start Lily's feed. When we finally got called back some woman who was not the doctor did the preliminary exam and then dilated Liliana's eyes. She then sent us to another more secluded waiting area. We waited, and we waited. Glad I brought a snack for myself which consisted of some pretzels and a Coke Zero (my favorite). At approximately 2 pm we were called back and then the fellow proceeded to exam her eyes. Finally the dr. came in and checked her over. They were very thorough. He told me that she has nystagmus but that this is common in about 15-20% of Ds kids. He said it may improve as she gets older, or get worse. Time will tell. Can't do anything for it. He also told me that she is near-sighted. That isn't a shocker since Bill is very near-sighted and has been since he was like 5 years old. He said she will definitely need glasses down the road. No surprise! He also thought that maybe she might have some cataracts because he saw some hazy spots on her eyes but he said it was a little too soon to tell. So, that was it in a nutshell and he sent us on our merry way. I know that when the time comes for Liliana to actually get her glasses I want her to get the frames called Specs4us (I think that is how you spell it). A local woman here in Cleveland designed them for our Ds kids and they are supposed to fit awesome! Here is the link to her website in case you are interested in checking them out. Watch the video it's fantastic! http://www.specs4us.com/about_us.html Well, I better run and try to motivate myself to do something constructive today. Have a Super Saturday!

Fun Friday!?

Decided to take the girls to the Lake Erie Nature Center here by our house for a picnic lunch and to see the animals. Bill was going to meet us for the lunch part, but that was the first part that got changed. We were in the drive-thru line at Mc'Donalds when I got a text saying that he probably wouldn't be able to make it he was stuck in a meeting. Bummer! Gwynny was really looking forward to having lunch with her daddy! Oh! Well! We headed over to the Nature Center and ended up at the picnic area across the street first. We set all our stuff up with Lily sitting in her car seat enjoying the breeze and warm sunny day on the picnic table while Gwynny and I ate. Well, everything was going fine until a big gust of wind came and blew Gwynny's chocolate milk over and all over her new skort! Ahhhh! Man! What a bummer! Well, we decided to head back home and get her some new clothes. We did and in the mean time it was now like 1pm and Lily needed to eat. We get back to the NC and I look down at Lily to hook up her feed and she was playing with her NG tube, the wrong end of her NG that is. She had pulled it out! Oh no! Gwynny of course wasn't having it to go home and put the tube in so I could feed her sister. I contemplated putting in another while we were there but it is such a hassle. So, we stayed and went through the NC in about a half hour until Lily couldn't take anymore and we needed to get home so I could put in a new NG and feed her. I have to say the G-tube is looking better and better every day. Here are a few pics of our very quick trip! Happy Friday!

Before and After!

AFTER




BEFORE


Ok, so someone started a challenge out in the blogosphere to take a pic of yourself as you are, right now, without changes. I think it is funny that this is considered a challenge. Yes, it may be difficult for some to post a picture of themselves without all the glam but I think the bigger challenge is can you find the time in your day, everyday to make yourself look the way you would like people to see you. I'm not talking about a complete makeover with the works but whatever it is you do when you spend a small part of your day making yourself look better and feel better about yourself. Call me vain, but I shower, put make-up on, and do my hair everyday. Yes, I didn't stutter, everyday! It's the one thing in my day that I try not to compromise. I have always been the kind of person that feels better when I have my hair and make-up done. Believe me, there have been plenty of days when I went places without doing anything but most days I try to do something to myself. I don't wear a ton of make-up, but I always say, "Even a barn looks good with a little paint." I am not trying to put the kabosh (sp?) on the challenge but I just wanted to voice my opinion which really means nothing. LOL! Well, gotta run! Liliana has an appointment at the clinic today with the peds opthamologist and I have to get myself ready and pack up the kids to go to Grandma's to drop off Gwynny before Lily and I go down there. Let you all know how that went later. Have a sunny day!

Therapy, Therapy, Therapy!

Today we spent approximately 2 and a half hours straight with our Intervention Specialist, OT, and PT. It just so happened that today was the only day they could come to our house. Wow! I don't know if we will do that again. Lily was fine about the first hour and then she started to get crabby. She was not being as receptive and clearly wanted to take a nap. By the time I got her feed hooked up and she was settled in her bouncy seat she fell asleep. Unfortunately, she only had about a 10 minute cat nap before PT showed up and she had to work some more. Everyone did comment on how awesome Lily is doing. She can turn over from her back to her tummy and pick her head up like a champ. She is very close to rolling from her tummy to her back. She just gets a little stuck and tends to throw her arms out to the side instead of underneath her. PT seems to think that she will be mastering this skill in no time flat. OT worked on her eating issues. She gave me exercises to do with her mouth to help strengthen those muscles. Lily really enjoyed chomping down on the OT's finger. We also are using a sippie cup I found here with her using her formula mixed with nectar thick "simply thick". She still has a ways to go with that but she is making slow progress. Overall, Lily is starting to wake up and come around. She is taking a well-deserved nap now as I write this.

Yesterday we had speech therapy and she brought Lily a teether that vibrates. Sooo cool! Lily's face was priceless when I put that thing to her mouth. It was like "OOOOO what is this?" She loves it! We will keep using that to also stimulate her mouth.

Therapy days are as tiring for me as they are for Lily. I feel like Gwynny does nothing but interfere with what is going on. She constantly has to be the center of attention. She will take toys away from the therapists and get right in their faces and Lily's sometimes talking to them and trying to get their attention. Thank goodness, they all tell me how much they like Gwynny and that it doesn't bother them. My thing is that it may not bother them, or maybe they are just being polite, but Gwyneth needs to learn to have some manners. I know she is 3 1/2 and some may say it's just the age but she is the main thing that wears me out on therapy days. I have tried getting her to go in her room with a treat and watch a movie but she won't stay in there. I have tried giving her other rewards but nothing seems to work. She just has her own agenda. I feel sometimes like I spend the majority of the time taking care of discipline problems instead of learning about whatever it is the therapist wants Lily to work on. Well, it won't be much longer and Liliana will be able to go to outpatient therapy and maybe I can have Gwynny stay with a sitter.

We're supposed to finally get some REALLY nice weather starting Thursday. I can't wait! We need to get out some more and enjoy the outdoors. I also feel like Gwynny needs to get involved in something. She needs to be around other children her age and have that social interaction. We went to the playground last Thursday and she had a great time playing with the other children that were there. She also enjoyed going to the library last week and playing with other kids. Well, I better run! More later!

No More Bactrim

I totally forgot to tell everyone about our trip to the urologist at the Cleveland Clinic on Monday. Well, Liliana had to go first to have a VCUG which basically means they put a catheter in her, filled her bladder and then waited to see how she peed. Well, she was such a good girl! She didn't even flinch when they put the cath in. She was very happy through the entire process. I was so proud of our girl! Afterwards we got to visit with one of our nurse's from the PICU. It was great seeing nurse Lauren again. She always made me laugh! Well, then we went to the urologist for her follow-up appointment. The great news is that Lily is not having any reflux into her kidneys so she is able to get off her antibiotic Bactrim which she had been on for a long time! Yeah! No more clogging up of the NG tube! We are thrilled that she is off another one of her meds. We are making slow but steady strides in the right direction.

Give 'em the raspberries!

Hello all! Well as most of you know we have all been a bit under the weather. The end of last week and beginning of this week we were not feeling up to par. Liliana is finally starting to sound better and I am on the mend too. This nasty cough with congestion in your chest and stuffy nose is awful. I wonder when we will actually get completely over it. Some of my friends have told me that the cough can last up to 6 weeks. That stinks!

Anyways, we had a nice Easter weekend. Aunt Annette, Uncle Ron, Max, and Jessie came in from Cincinatti to spend Easter with all of us. The kids colored eggs and had an egg hunt on Saturday at Grandma and Grandpa's house. Then Sunday we did the Easter bunny thing here and went to church. Our church had an awesome dramatic production about Jesus breaking our chains. No matter what you are dealing with whether it be depression, guilt, pride, anger, whatever your chain may be Jesus came to this earth to break those chains by dying on the cross. He made the ultimate sacrifice so that we might be free from the chains of life that bind us. It was fantastic and anyone that was there and is not a follower of Christ should have been touched and moved through the production. The kids had an egg hunt and other Easter activities during children's church which Gwynny truly enjoyed.

After church we went to Grandma and Grandpa's house for breakfast. We had a nice spread of eggs, toast, bacon, sausage, fruit, cinnamon rolls, and muffins. I ate way more than I should have especially since I am on Weight Watchers and am trying to lose weight. Gwynny ate soooo many hard-boiled eggs! It was ridiculous! She ate like 5 total on Easter. Even this morning she ate 3! Is that bad? She is such an egg fanatic. What's a mother to do? Anyways, back to the story, Gwynny stayed over at Grandma's house and Bill and I came home for a few hours so I could make dessert and deviled eggs. Lily took a very short nap that day. We went back to their house around 4:30pm for dinner. Then after dinner and clean up everyone came over our house for dessert. My niece and nephew are so into the Wii and we have the Wii Fit so they were having a blast playing that. All in all we had a fun weekend. Busy and would have been better if Lily and I felt better but at least we didn't have to do the whole Easter dinner over here which was the original plan. Bill made the decision that we weren't having dinner over here on Saturday when he saw that I was struggling. Being the person that I am I wanted to try and do it but looking back now I am glad he made that call. Sometimes I think we need to let our hubbies make those decisions for us.

What's new with Liliana? Let's see. She is now giving people the raspberries! It is sooo funny! The speech therapist loved seeing her do it yesterday because she said that is part of the beginning sounds of speech. Not sure how the OT will like it, but I guess we will find that out tomorrow. Lily also has been more verbal with consonant sounds like ADA, and ANA. The ST told us to work on the sounds m, b, and p because those require the use of your lips and keeping the tongue in the mouth. She also suggested we start waving "hi" and "bye" to Lily because she is about at that age. Sadly, we do not have PT again this week. Last week we cancelled because we were sick and this week she cancelled because she is out of town. Oh! Well! guess we will just continue to put Lily's hip helpers on and practice our exercises on our own. That's about it in a nutshell. Just can't wait till tomorrow and the end of the week. We are supposed to get warmer weather and we are itching to get out and go to the playground or something outside. I tried to get a pic of Lily doing the raspberries but I wasn't very successful! Have a great day all!

Good Friday?

Well, today is the day that we are to reflect on Jesus death on the cross. He died on the cross to save us from our sins. He endured pain and suffering for each of us even though he did not have to. I am so thankful that he died for me and that he continues to show me every day how lucky I am to be a child of God. With that said, I will tell you how my little Liliana has been suffering. The past three days, Lily has been sick and I have been sick. We caught this obnoxious cough and cold thing that gives you soooo much congestion in your chest it feels awful! I finally didn't mess around yesterday and decided to take her to the pediatrician. We didn't see our usual, but the doctor we saw is new and actually is very thorough and I like her a lot. She checked Lily over and said that her lungs sounded clear. I then asked if we could still get a chest x-ray given Lily's medical history. She was all for it! We went down to x-ray and Lily actually did very well considering she was strapped down to a cold hard table with her arms straight up over her head. We came home and about an hour later the doctor called and said that the good news was that Lily did not aspirate (thank the Lord), but that she did have some fluid in the middle part of her lungs. With this finding, the doctor chose to put her on azithromycin for a 5 day period to clear up what appears to be an infection. Despite all the drama Lily has been a pretty happy baby up until this evening. We decided to go get some fish since it was Good Friday and I didn't feel like cooking. We loaded everyone up in the car and made our way to a little restaurant near by that advertised an "All You Can Eat" fish fry from 4:30-7pm on Friday. We ate our delicious dinner and towards the end Lily started gagging and then throwing up. It was awful! I thought she was done and we packed up and got in the car to head to my in-laws when she started gagging again on the car ride. I then told Bill to bring Lily and I home and he and Gwynny could go to his parents house. Poor Baby, continued to gag and cough and throw up at least 3 more times. I finally got her calmed down, changed, and gave her her meds. She has now been in bed for almost an hour without a sound. I have to go up and start her continuous nighttime feed soon and I am very nervous. I am hoping this is not going to be a sleepless night of throwing up. All I can say is this may not have been a "Good Friday" for Lily, but I thank God that if it wasn't for him she wouldn't be here with us today. He gave her life and he saved her life and he is the good in Good Friday! AMEN!

Busy Start To The Weekend...

Thursday and Friday this week I took Liliana down to the Cleveland Clinic to have her Barium swallow study and her follow-up with the Gastro doctor. We got down there by 9 am on Thursday and she did exactly how I thought she would. She was able to take the solid foods (applesauce with barium) pretty good, and she did ok with the nectar thick liquid (that's what they call it, must be because it's the consistency of fruit nectar?), and then failed with the thin liquids (regular formula). So we were sent home with some samples of simply thick to mix with her formula to make it nectar thick. We got home and OT was here and was very excited to hear about the results. She immediately wanted to jump in and get her started on taking the nectar thick. We spent some time in my kitchen trying to find the right sippie cup and container to mix it in. That was a trip! We finally decided to use a regular baby spoon after dirtying up several cups and me trying to make the holes bigger on one (oops! didn't work) and give her a little at a time on there. She responded pretty good but she really needs a lot more work! So now I have one more thing added to my plate that I have to work on with her.

Friday we had an afternoon appointment so after deciding what to do with Gwynny because she was running a low grade temperature I ended up taking her to my sitter who was very nice about taking her. Lily and I headed back down to the clinic and saw her gastro doctor. Good news is she is gaining weight nicely! She was 13 lbs. 14 oz. beginning of March and she is now 14 lbs. 13 oz. now! I am so happy about that! We talked at length about her feeding issues and she and I both agree that it is going to take a miracle for Liliana to master taking enough food by mouth to avoid having to get a G-tube in her stomach. We are still going to give her until the beginning of June before we make any decisions. Just so happens that she is scheduled for an MRI of the brain on June 1st and will have to undergo anesthesia for that procedure. They could try to schedule both her MRI and G-tube surgery on the same days so she wouldn't have to have anesthesia twice. So anyways, there are a lot of if's and maybe's here. We just need to pray that God's will be done. Whatever happens give me the strength and courage to deal with whatever comes my way. Sometimes I feel like throwing in the towel because it just seems so frustrating. Like part of me is saying why are we even bothering with trying the nectar thick if it probably won't make any difference, but I keep on keeping on.

On a different note, I went to a Kiddie Kloset sale today and I found a Bumbo seat for Lily for $8. I am so excited because so many people recommended it for helping with sitting up and eventually I could feed her in there. I also scoped out high chairs but no one had any portable space saver chairs like everyone recommended. I am probably going to go to Baby's R Us sometime this weekend or this week to check out the Fischer Price one. Anyways, it was a fun way to start off my Saturday! Have a great weekend!

The Meeting of the Cousins

Look at me! I can rollover on my tummy!



Last Friday my sister-in-law came to visit from Indiana with her 5 month old little girl! Her name is Jenna Marie and she is such a cutie! Both Gwynny and Liliana loved seeing her. We had a little photo shoot with the girls in their similar sleepers with dots and hearts. It was a great weekend! That's about all I have to say except, oh yeah, I do have a few things on my mind.

I called about the speech therapist and they called me back with the name of who will be taking her place and told me that she will call me next week to set up a time. I hope they follow through!

The only other issue I am having issues with is my high chair. I hate it! I got it as a gift with my oldest and it worked ok with her, but she didn't have the issues that Lily does. I swear the thing is lopsided! For real! My OT said to put her in it and put towels around her to prop her up, but she still wants her reclined at the same time. Well, it reclines alright but it leans to the right. So what to buy to replace it? I have no idea. I need something that will work with her as she grows too. Any suggestions would be greatly appreciated.

Last and probably the most exciting thing is that Liliana can now roll over on her tummy. It is so cute! She still isn't very fond of being on her tummy so once she gets there she eventually starts crying. Man, the other morning I had to keep going over and turning her back on her back because she kept rolling back onto her tummy! We are sooo excited for her! The pictures at the top reflect this as well. Well, hope everyone has a wonderful Wednesday! Bye for now.