Friday, January 30, 2009
Posted by Kali at 4:10 PM
Thursday, January 29, 2009
One of my best friends, Sarah, has started a blog!! You have seen many pictures of her daughter Sydney. We pregnant together and Sydney is like 2 1/2 weeks younger than Parker. She is a great friend and has always been there for me when I need her. We took child birthing classes together, we have been on countless trips together and now our kids get to grow up together! Her and her husband were right in the thick of things with us during Parker's diagnosis. We cried together and laughed together during that crazy time. I will never forget the first time she met Parker....It was at Childrens' hospital. I was standing by tiny little Parker in his ICU bed and she walks into his room. She came over and hugged me and we both cried and hugged each other for a good 5 minutes. I had been trying so hard to be stong for everyone and not cry, but when I saw Sarah the tears just started flowing. I think it was at that moment we realized that what we had planned and anticipated together for the last 9 months was going to be very different than what we thought. I rarely let people see me cry like that--besides Dennis. Even though this last year was VERY different than we thought, I wouldnt change it for anything. I love watching Sydney and Parker, and I am so excited to see them grow up together and become close friends! Maybe sometime I will share the experience of when I met Sydney for the first time (it was an amazing day, but emotional)....
This is Sarah and I in Wyoming
Posted by Kali at 10:30 AM
Wednesday, January 28, 2009
Today Parker had MDO and he did amazing!! I walked in and I see him coming down the hall in a walker with a huge smile on his face!! All of the teachers told me how good he did. They said he didnt cry at all. And he had ALOT of food on his face....that always means he had fun! I worked all night at the hospital last night so, after I dropped Parker off I went home and slept until it was time to get him (about 2 1/2 hours). After MDO I took him to PT. He did alot better this week, he wasnt so tired (could be the change in meds).
Dennis and I went to pick him up and we walked around the corner and just stuck our heads in the door so we could watch him without him seeing us. We looked in and we saw Parker walk 4 steps all by himself!!!! We could not believe it! We went in and he walked a couple of steps to me--he had the biggest smile on his face!!! It just melted my heart. He has worked so hard for this. His therapist thinks that we should get his leg braces next week and she thinks that they are going to do wonders for him. He should be walking really soon! I didnt have my camera! I will try to get a picture posted as soon as I can. What an exciting day!
Posted by Kali at 2:50 PM
Tuesday, January 27, 2009
I love everything pink, but I didnt want my blog to always be pink because it represents my family (and I am the only girl in the house!). SO....since it is almost Valentines day, I thought it was an excuse to "pink it up" a little!
Posted by Kali at 1:51 PM
Friday, January 23, 2009
Yesterday Parker started looking really puffy/swollen, he was pretty irritable, and he didnt have very many wet diapers. Last night I called and the doctor told me he would be fine overnight, but I should bring him into the clinic in the morning. So, this morning we were off to the cardiology clinic. Going to the clinic isnt much fun anymore, since Parker started being scared of everyone wearing scrubbs or wearing a stethoscope!! We managed to get an EKG and an Echo. The doctor said that his heart function has not changed since his last visit (still moderately decreased) but his tricuspid valve is more leaky (moderate to severe), this is called tricuspid regurgitation. He also said that his liver is palpable (slightly enlarged). This could be from the extra fluid or the valve. He increased his lasix back to twice a day and he started him on Digoxin. His heart rate was slightly high and this medication will lower his heart rate and help the heart work more effeciently. I guess this was a little reminder that my little man does have a sick heart that will never be "fixed". He said that Parker does look good he is just growing and his body is showing signs that is is suppose to show before his next surgery. We still dont know when his 3rd open heart surgery will be, but it will for sure be in the next 1-3 years! Please pray for my sweet Parker. I know that things could be so much worse, but I still worry about him---Im his mom!!
Posted by Kali at 3:25 PM
Thursday, January 22, 2009
Posted by Kali at 4:15 PM
Wednesday, January 21, 2009
Well, this morning I dropped Parker off for his first day of Mother's Day Out at my church. I was kinda sad to leave him because he started crying, but by the time I was down the hall he had stopped. So, I am sitting at work and I am getting to actually work (and blog!). Everyone at the office has been asking about him and they all miss him crawling around. I think getting a break from Parker once a week is going to be a good thing. Dont get me wrong, I LOVE being with him all the time, but he needs to learn to be away from me. And I need to learn to be away from him! He knows that I am coming back and I think this will just make things easier when he goes to school and for Sunday mornings at Sunday school.
Yesterday, I took Parker to get his Synagis shot (RSV vaccine). I had a small breakdown when we were there. As soon as he saw someone in scrubbs he started screaming. It makes me so sad that he is that scared of doctors and hospitals. I hope it is just a phase, but I have to take him to get the shot once a month and he has to go the the clinic a lot during the year. What is he going to be like next year when he has to have open heart surgery!! Anyways, I just hate that I have to take him to those places that make him cry. BUT!! I do have to tell you that he has gained 3 lbs in the last month....that Pediasure is definitely doing it's job!! He weighs 19.3 lbs! Go PARKER!
I will post again later and let yall know how MDO went.
Posted by Kali at 10:11 AM
Monday, January 19, 2009
Please pray for Harper and Brayden. These sweet little newborns are both fighting for their lives in the NICU at different hospitals. They were both born last week and have both had lung issues. Spending time in the ICU after your baby is born is an emotion I am very familiar with and I have been praying for these sweet families all weekend. I know that all a mother wants to do after giving birth is to hold their precious baby. They are such wonderful examples of faith. Please read their stories and please join me in prayer.
Posted by Kali at 9:05 AM
Friday, January 9, 2009
I dont know if yall know, but Parker comes to work with me everyday. I share an office with my mom and Parker just plays and plays. He is so good. He also has a bed in the closet where he takes his naps. It is a wonderful setup and I know that I am VERY lucky. Well, I thought I would show you his pile of toys that he has accumulated over this past year. Everyone in the office LOVES him and will just randomly give him a toy. SO, his pile just keeps getting bigger! Our office is not that big so we are constantly walking or tripping over something. The exersaucer in the picture is only there because he loves to crawl through the bottom of it like a tunnel. He wont sit in it anymore.
Also, Parker started doing something today that I just could not believe!! He has done so much new stuff this past week. He started pulling up on the furniture on Monday and now he has started walking behing this walking toy. He can only do it for like 5-10 seconds but I still cant believe it!! We are in trouble now...I think I might have to get a gate before too long or noone will get any work done!!
Here is a picture of Parker just sitting at my office door. He just loves to sit in the doorway and watch all the people. Of course, they all talk to him and play with him. He is a charmer!
Posted by Kali at 4:50 PM
Wednesday, January 7, 2009
I haven't sat down and watched an entire Razorback basketball game since the Nolan Richardson days. Finally, we are good again. If John Pelfrey has done this much in his first two years, I can't wait for the next couple of years of Razorback basketball!! Last night we beat Texas and last weekend we beat Oklahoma (both in the top ten)!! All I have to say is...we better be ranked after this week!
Parker has been crawling for a month or so now and he has been crawling like an army man. he doesnt use his legs at all. He just pulls himself with his arms. At therapy, she has been working with him to use his legs and arms! Well, yesterday he started going up on his knees. I know that yall probably dont care, but I took a video of it last night. I just think it is the CUTEST thing, his little bottom is sticking up in the air and he can go so fast now!
Posted by Kali at 10:32 AM
Tuesday, January 6, 2009
Posted by Kali at 10:03 AM
Monday, January 5, 2009
On Friday night we went out to eat with my family for Dennis' birthday.
Posted by Kali at 11:29 AM
Friday, January 2, 2009
Posted by Kali at 4:35 PM
On Tuesday night we went to Stephen and Sarah's have dinner and just hang out. Parker and Sydney had so much fun together. It is so neat to watch them grow up together. They are finally getting to the point where they will kind of play together. Sydney got a new 4-wheeler for Christmas and Parker LOVED it. Sydney wasnt too happy to share so she started pushing him! Dennis wasnt too happy that Parker's first 4-wheeler ride was on a pink 4-wheeler!!
Posted by Kali at 10:59 AM