Sunday, May 29, 2011

No pictures

I am sure this is going to disappoint a few people but I don't have too many pictures to post this week. I will try to take some tomorrow and get them posted. I turned the Big 35 on Monday and loved coming home to my girls and hearing them say "Happy Mommy" and then trying to sing Happy Birthday. They were very happy to have cupcakes that were made by nanny MiMi. The girls spent the night with my parents on Thursday night and according to grandma and grandpa all went well. They took them to a dinner at the hospital and got quite a bit of attention. They even got to have Birthday cake for all the cancer survivors. Troy and I went to the Wine Fest fundraiser for the March of Dimes at Union Station and it was amazing to see all the support. We then took advantage of the free baby sitting and went to a movie. Troy took the girls back to Burlington on Saturday so he could go watch State Baseball and I went to KC to get my hair done. I am going to the Florida Keys this week with my two best friends from Reading. We are leaving on Thursday and then getting back Monday afternoon. This is my first time to leave town since the girls were born and I am a bit nervous about leaving them for so long. This trip couldn't have came at a better time as Jill's family lost their family home and Jessi's family lost their family owned grain elevator in the tornado last week. It will be so nice to get to spend time with each other and be able to lean on each other for support. I went to church today in Reading and was overwhelmed with seeing the damage. I still can't believe this happened. It did feel good to see that everyone is okay and handling the situation so well. I will not do a post next week as I will be in Florida enjoying my time away. Daddy will be holding down the fort so wish him luck!

Sunday, May 22, 2011


I am very saddened that the town I grew up in was destroyed by a tornado last night. The town has only 250 people that live in it and over 20 of the homes were completely destructed. I don't have any family that still lives in Reading, Ks but all of my friends families still live there and the community has always been family to me. I am not looking forward to the day that I go visit the area and see all the damage. Please keep all my friends and their families in your thoughts and prayers.

We enjoyed the day yesterday in Emporia, Ks at my sister's graduation and party and the girls went without a nap. Lets just say I will not do this again anytime soon. They had some melt downs when we got home. We then had to wake them up at 10:00 p.m. to go take shelter at our friends house due to some tornado warnings in our area. We stayed there until midnight and then were able to come home. I think we might just have to look for a house that has a basement now. I went to the NICU family room today to volunteer and met some great families that have babies in the NICU. I was able to talk to a women who gave birth to twins at 26 1/2 weeks and was able to give her hope that her babies will be just fine. It is hard to tell someone like that about our journey as it was such a hard road and I don't want anyone to have to go through what we did. I will celebrate my 35th birthday tomorrow and all Rylee has to say is "I like cake"! I do believe we will be celebrating with some cake. lol

Sunday, May 15, 2011

Tiny K/Infant and toddlers update

We had Tiny K here on Wednesday night and we couldn't be prouder of our little girls. The program was developed for kids ages 3 and under that are developmentally delayed. We were expecting the girls to be in the program until they were 3 and then transition over to the school district system. After talking with our specialist she doesn't feel the girls even qualify for Tiny K anymore and doesn't think they will qualify for services thru the school system as well. We are really shocked with how well the girls are doing right now. They amaze us daily with what they know and are so eager to learn new things. I am still so impressed with Rylee's speech considering she has only been able to make noise for 10 months and having a paralyzed vocal cord on top of that. We will probably try to get them into some sort of pre-school this next year if our pediatrician feels it is safe enough for them to be around all those other germy kids. lol I enjoyed a day out with five other Baldwin ladies yesterday and didn't get home until 2:00 a.m. Lets just say I am way too old for that! I took the girls to the Legends today to meet my sisters and family at the Trex cafe and the girls were a little overwhelmed with the surroundings. We made a couple of build a dino's and they are scared of them and didn't want them in their room tonight. So far Ry is doing great with no thickener in her drinks and it makes it so much nicer for us to not have to worry about it. She is still coughing some but hasn't gotten sick so that is a good sign.

Sunday, May 8, 2011

Mother's Day and Rylee's 2 yr homecoming day!

Yesterday was Rylee's two year homecoming day. I never would have imagined that this child would be doing as good as she is doing. We brought her home and she needed 9 different medications that we would have to give her every three hours. She was also 100 % g-tube fed until recently. We are no longer giving her any type of medication and no longer using her g-tube. She will probably keep the g-tube in until next spring. We want to make sure she stays healthy before we remove it. We went to CMH on Friday for her ENT follow up and everything looked great with her trach site. We are going to wait 6 months before we do any other type of surgery. Her trach hole (stoma) has completely closed up and we got the okay to take her swimming. Whoops we have already done that but we were very careful! We also went to OT and they are going to let us not use her thickener in her fluids. She did cough some when we tried it in the office but the therapist felt comfortable with us trying it. After this appointment we went to St. Lukes NICU and were lucky to see two of our favorite nurses and a couple of the doctors. Everyone seemed pleased to see how good the girls are doing. We decided to make a fun day out of the day and went to Deanna Rose Farmstead and had a great time. I enjoyed my 3rd Mother's Day as a mother today at a family picnic in Emporia. The girls had a great time and Troy and I are exhausted after chasing them all day. These girls have no fear and climbed everything in site. I am feeling really really blessed to be a mother today. I know there are several women out there that would do anything to be a mother and my heart hurts for them today.

Sunday, May 1, 2011

March of Dimes

We walked with our miracles today and so far we have raised $905.00! We are so thankful for all the donations and we know they are going to a great cause. The weather was not the best but we still managed to have a great time. I included a picture of the girls holding a molded baby that was the exact size they were when they were born. The picture makes the baby not look as small as it was in real life. When I looked at the baby it still didn't seem like the girls were ever that small. Today really reminded me how blessed we are. I didn't like seeing all the "In memory" of posters or shirts. Rylee has two appointments at CMH on Friday. I am taking her to the OT clinic and they are going to see how she does drinking liquids without thickener and then we have a check up in the ENT clinic.