Confession!!

We have had a monumental thing happen in our house this week - drum roll please - Luke is officially off his crazy expensive, prescription formula Elecare!!! I never knew it would be so exciting to have a kid who can drink milk (with calorie boosters in it of course), but wow it is such a great feeling. We tried introducing milk last summer and it was a no go - bad GI things occurred. He had gotten to where he would drink out of a sippy cup just fine, but he would only drink his formula out of his bottle and only drink milk or really anything besides formula out of his sippy cups. He has been taking drinkable yogurt or milk to school for a while now, because he wouldn't drink any of his bottle at school - to cool for bottles at school. ;-) Then we were able to get him to milk 2x a day with no GI side effects, so this week I just went for it. This is the fourth day with no formula and he is doing great!

So we actually got rid of his bottles and formula at the same time - YEAH!! We were so sick of washing those stupid Dr. Brown bottles. Preston moved on to a Nubby bottle this past summer so we are saying goodbye to the Dr. Brown's and putting them away!! I did try to get Preston onto a sippy cup this week, but that was a disaster and very frustrating. Long story short, we will be trying in feeding therapy to teach him to use a sippy cup or straw and we will not be trying milk with Preston until he is tolerating solid foods very well, so probably end of summer. He is the one with the bigger GI issues, so it makes sense that he would be on the Elecare longer. One down works for me!!

Now onto my confession - I love hip hop/rap music. I don't think this is a real secret to many of you, but as soon as I found out I was pregnant I told myself when the babies got here I didn't want them to listen to crazy music, so klty or kids music it would be when they were in the car - best laid plans, right?? Well, when they first got here we actually did listen to a lot of classical music because it was soothing to them in the car, but somewhere along the way - well I think I know when it was specifically, that changed.

I was driving with both babies in the car, by myself, stuck in traffic, in the rain taking the new to us, used escalade we were getting (after mean vandalizing hooligans broke in our old escalade and poured paint all on the inside, TOTALING it) over to my Dad's car guy to check it out. The babies were about 5 months old, around 3 months adjusted, and they were both screaming their heads off. I tried the classical station and the extremely annoying baby CD, but they didn't even give a glimpse of relief. So I just said screw it and turned it to 97.9 or kiss or one of those and just tried to find a song that would soothe me (and drown them out). So thus it began, I started having no problem listening to the stations I liked because they obviously didn't understand the lyrics and maybe even liked the beat of the songs sometimes.

Well, here we are today, in the car going to lunch with a friend and OUR favorite song comes on - David Gueta and Akon's Sexy Chick. The boys love it when we "dance" in the car to songs.... so WE DANCE and Preston bobs his head and kicks his legs and Luke waves his arms and claps, while I sing "your a sexy chick". Here's the song below if your interested in getting the full mental picture (I only know how to attach a youtube video so please disregard the crazy video and/or the whole song if your horrified by it too ) just picture us "car dancing" to Sexy Chick.



So when am I going to stop listening to crazy songs I would not want to have my child repeating?? Not sure yet, but I think we are getting closer to that point. Preston sings a lot of songs - twinkle twinkle, row your boat, itsty bitsy spider - parts of jesus loves me, wheels on the bus, and the backyardigan's theme song and Luke is singing most of those too. But they aren't singing Sexy Chick, Usher's Lil' Freak or any other songs on the radio - YET.

Here is the exact reason why I won't be listening to these songs much longer. Once time, when Randy and I were engaged, I was sitting at Stone Briar Mall in Frisco, the land of a thousand children, eating lunch. The mall was swarming with kids and this little girl was playing near the table where her mom was eating. She was probably around 4 and out of no where she busts out the Gwen Stefani song Hollaback Girl - a full rendition of it including dancing. So there she goes, "I ain't no hollaback girl, oh this my shih, this my shih (supposed to be shit), let me hear you say this shih is bananas, b-a-n-a-n-a-s." That, then and there, made me say to myself that is not going to be my kid.

Now I know moms say things they are going to change all the time before their children arrive, but this one is one I want to stick with. So time is drawing near. I better load up my ipod and go on some long runs because my days of dancing with the boys in the car are close to being over. But I will say we have a lot of fun being silly rolling down the road and it is a going to be sad when that day ends. Don't get me wrong I love Christian music, but it's not that easy to dance to and there ain't no dancing to kids silly song cds. I may have to go on a search for good, danceable songs that I wouldn't be mortified if my 4 year old started singing and dancing to at the mall. I'll let you know if I find any!! ;-)

Do you think you're Irish?

Once again the weather was fabulous this past weekend so we decided to head out to the park on Sunday. We have still been back and forth staying at my parents because of the work being done at our house, so we went to Parr Park in Grapevine. When I was first on the American Eagles soccer team we practiced there, so we love that park and they have really made the playground area very nice so the boys had fun. Luke really loves slides - and going down them head first. Preston is starting to like them more if you hold his hand on the way down.

We brought the boys tricycle that Aunt Stephanie and Uncle MiC got them for Christmas. They can't quite reach the pedals, but it's adjustable, and has a handle on the back so you can push them. It also has seat belts so they don't fly off. They actually love pushing each other in it. It was really cute! We brought our outdoor blanket and after the boys played on the slides they decided to just run around and explore with Daddy, so me, Nannie and Grandpa just rested under the tree. I am pretty sure Grandpa snuck in a little nap, too! We brought Bianca with us and she was a pretty good girl. I was walking her and pushing Preston in the tricycle and she loves to pull until she starts snorting and being all crazy and Preston thought is was so funny. He couldn't stop laughing at his silly doggie. He pays more attention to the dogs than Luke does. He pets them both every now and then. He even tries to "ride" on Bianca if I am not looking. So we had a nice Sunday relaxing outdoors! I just keep telling myself to get out there and enjoy the beautiful weather, because before you know it, it will be July and 100 degrees out!!

Since this week is Spring Break, the boys didn't have school Mon, no bible study on Tuesday, no music class for Preston today and the only therapy we are having this week is feeding/speech therapy tomorrow. So this week has been kind of slow!! I have been getting lost in my days and for some reason I keep thinking we are a day ahead - strange. We are celebrating St. Patrick's day by having a sort of traditional Irish meal. I don't like corned beef, so we are having roast, but we are having Irish bacon and cabbage with carrots and potatoes. Should be interesting! I am not the hugest cabbage fan, so well see. I know Luke will like it because he likes cooked carrots a lot!! Oh and don't get the false idea that I cook every night, because that would be a joke. I am not a bad cook. I think I am actually a pretty good cook. I am just a bad planner. We never have any groceries in our house to actually cook dinner with. This is the first time I have cooked (or gone to the grocery store) all week, but I am hoping to improve on that. ;-)

Randy and I always do this on St. Patrick's Day - we tease each other about him not really having any Irish in him (that he is aware of) and me most likely having some Irish in my family. It's just a funny little thing we do, we tease each other like it's bad TO NOT have or TO have Irish in you, each of us bragging our heritage is better - haha. But that does remind me about that new show on NBC on Friday nights called "Who Do You Think You Are?". I definitely recommend watching it. It is a really cool show that totally makes you want to go search your families' genealogy. I hope someday to do that! Who knows I might have more Irish in me than I think??

I have had a lot of people on my mind that I have been praying for this week. I have two friends going through some unbelievably hard times right now. I received the sweetest e-card from one the friends and she said something in it very profound that I don't think she would mind me sharing with you. She said "when I was angry with God and couldn't pray, you prayed for me". She went on to say that God answered my prayers in a specific way for her. I was deeply touched by that. It is an amazing reminder that our prayers are not futile and that they may be helping in way you would never realize.

I know many people we have never met lifted my family up in their prayers when Preston had his first head surgery and the following day my Dad had his heart attack. I definitely was praying then myself, because that's the only thing I knew how to do at those moments. But afterwards when I found out that people - groups of people I have never met - where praying for my family specifically by name it made me really feel the power of prayer. I am sure many of those people prayed for things I never would have thought to and I know with out a doubt their prayers impacted my life. I think it is a good reminder that the prayers your are saying for others do not go unnoticed or unanswered - so keep them up!! And thank you again to all of those who keep my family in your prayers. I know God is listening to them.

Preston's surgery update!

We were able to come home from the hospital yesterday and Preston was so happy to be home and be FREE. He has been playing with his toys, singing and generally unphased by the last two days. He even had a few bites of spaghetti sauce last night at dinner and he said yum yum!! His Grandma (Randy's mom) kept Luke while we were at the hospital and she got them some fun new cars that Luke has loved playing with. Luke really loves to play with cars!!

Preston's surgery went smoothly, but he did have some breathing issues again when he was extubated that landed him in the PICU instead of the regular pediatric floor. His respiratory issues were resolved fairly quickly, but they wanted us to stay the night in the ICU to be safe. Preston had a bronchoscope done by his ENT as they extubated him after his surgery and they were able to get a good look at his airway. He has laryngomalacia (a floppy airway). It is a congenital abnormality of the laryngeal cartilage. So when his airway gets irritated it collapses and restricts airflow. This is hopefully something he will outgrow and the cartilage should stiffen up.

So anyways, we had to stay in the PICU which isn't a fun place to be for a little boy who hates nurses touching him or for us either. Obviously in the ICU they are more concerned about taking vitals all the time because the situation putting you there is more serious. But Preston's breathing issues had subsided and he was screaming his head off and every time he started to settle down they would come take his temp or try to take his blood pressure and he would start screaming, wiggling and generally going crazy. So after about an hour of this I was about to lose it and go off on his nurse. Poor thing she was very sweet, but I was sitting in his bed, trying to hold him and get him to settle down and I was freaking out that the stupid wire was going to break. Randy and I, sort of panicked and said we have to get out of the PICU because this is not going to work. Also, you can't get a good reading if he's screaming, the pressure will appear high because it goes up when your screaming at the top of your lungs. So we told the nurse we wanted to be moved, and she got the head nurse, who called the ICU doctor and she said she preferred that we stayed here just because the ICU is more equipped to intervene if his breathing should act up again. She did agree to back off in monitoring his vitals and treat him more like a regular floor patient. She still made us keep the heart and lung leads on him so they could monitor his respiration and heart rate, but they at least weren't coming in to bug him every 15 minutes. I got really good at sticking those leads back on to get the monitor to stop beeping at you when the boys were in the NICU so that wasn't too bad. So once, they left him alone we were able to get him to calm down (with lot's of help from his favorite elmo videos) and Randy and I calmed down too ;-).

To prevent the wire from breaking again they wound the wire up around his head and covered with bandages so that the flimsy portion of the wire was under the bandages and the sturdy portion was the part coming out. I was still a little nervous about it so I basically sat up the whole night watching him to make sure he wasn't tugging on it as he rolled around in the bed and he was in a regular hospital bed so I was also scared he would fall off if he woke up and tried to get out. Randy and I have always called Preston "The Roll-Arounder" because he tosses and turns so much in his sleep.

Thankfully the precautions to keep the wire from breaking worked well and we were able to get the information they needed. His doctors felt confident after the monitoring that he does not have excessive pressure on his brain from his abnormal skull growth. This is very good news and now we should be able to watch him and wait to do another cranial vault remodeling a few years from now. The longer you can wait, the more permanent the results are, making it less likely to need another surgery. We have to keep an eye on his development and watch for plateaus or regressions, but hopefully he will be fine to wait a few years and we pray that he only makes strides to catch up developmentally. Then in a few years we will have to decide if another surgery is necessary or not, depending on how his head growth has been.

That's the long and short of it. Preston was supposed to start an intensive inpatient feeding therapy this month to get him eating solid foods and age appropriately. This was post-poned because of his skull issues. So we are back on the books at Our Children's House, a Baylor pediatric therapy hospital, inpatient feeding program. He should be admitted mid to late April. He will be actually in the hospital for up to 5 or 6 weeks straight, but I haven't actually let myself think to much about that yet. I know that it will be worth it in the end for him to be able to eat. A few months ago he was getting brave again and would try some things every now and then, and it is heart breaking to watch him try to eat something so small as a dissolvable puff and him gag and throw up from it. He is now back to not putting food close to his mouth again because we think he got frustrated from not being able to eat. My prayer will be that he catches on quickly because feeding therapy is brutal. Last year the day patient program we did with the boys nearly sent me over the edge. Now that was with trying to juggle both of them, but we got to go home at the end of the day. The hard part is that you have to keep going past the tears, the screams, the gagging, the vomiting and the psychologist or speech therapist sitting next to you doesn't make it any easier. They tell you to talk like a robot when you give them the command to "take your bite" and then be super happy and praising when they take their bite. About 100 times last year I wanted to throw the spoon at the lady and say is this happy enough for you!!! But you know what you get through it and you do what you have to do for your babies.

On Monday night in the PICU waiting room I was sitting out there eating the Mico's enchiladas that my Mom brought me (enchiladas means it was a bad day-that's my comfort food) and my Mom started talking to this other Mom sitting out there. That's so not me to start carrying on a conversation with stranger so I sat off to the side until it was starting to be awkward that I wasn't joining in. So I walked over and introduced myself and her name was Jennifer too. I had already heard that her baby had leukemia and as some of you know leukemia families hold a special place in my heart because my best friend had leukemia when we were in middle school. Jennifer was the sweetest, most kind hearted person I have met in a long time. We sat their sharing our stories with one another and what her child has gone through was unbelievable. Her son is 18 months old and in remission from AML (just like my friend had, and just like my best friend Christina's cousin just recently had) and I felt embarrassed that I had thrown such a huge fit about moving Preston when I should be thankful his breathing issues hadn't been so severe they couldn't get him off the vent. Jennifer's son had coded several times since the beginning of his illness and it's truly a miracle that he has made it through it all. I know it's all relative when it comes to what your going through, but every time we have been at the hospital and are maybe feeling a little down or sorry that Preston is having to endure this I am reminded that it can be SO MUCH worse. Jennifer and I both cried a little when were talking. We talked about how things could be so much worse and how you have to be thankful for what you have. She had to watch as a family in the room next door to there's child passed away and sit there holding her terribly sick but alive little baby. Those are things no parent should have to go through. My heart goes out to Jennifer, her son Lucas and their family and they are now on my prayer list.

Randy and I take turns on who we hold when we put down the boys at night and I was rocking Luke last night and thanking God for his health and safety. No matter what I am facing and when I get down about things, I try to thank God for the blessing he has given us and I try my best not to dwell on the things that are lacking. So I encourage you tonight when your holding your babies to hold them a little tighter and thank God for the blessings he has given you and pray for the families who are struggling through any parent's worst nightmare - a child with cancer or any life threatening illness or disease.

Thank you all for your prayers and support!! It feels good to start moving past Preston's head issues and start getting to his feeding. I am just going to focus on how wonderful it will be to watch him play this summer and eat some table food just like Luke. Thanks again for all the prayers and offers to help! I will be taking ya'll up on that while Preston is in the hospital for his feeding therapy. We will definitely need help with watching Luke and Randy always loves it when people bring food!

I also encourage you to register to be a bone marrow donor or if your pregnant think about donating your cord blood. You can register to be a donor at http://www.bethematch.org/ and if your pregnant and interested in donating cord blood call the hospital your going to deliver at and be persistent about getting an answer as to whether or not they collect cord blood to send to a donor bank. I just looked at the be the match site and they also have info about donating cord blood. No one ever told me about this when the twins were born and we were able to bank Luke's cord blood, but from what I have read now donating is better because you may never need your child's. Jennifer told me that even if they had banked Lucas's cord blood his own wouldn't have worked and her other son's wasn't a match. So please look into donating cord blood - it is what is saving Jennifer's son Lucas's life and many more are looking for a bone marrow donor - so think about it!!

Spring days are here!!

Every year when the weather starts to turn nice I try to tell myself to take full advantage of the awesome days and get outdoors and enjoy it. Friday was a beautiful day, but we had Preston's pre-op visit at Medical City and that pretty much ate up the whole afternoon. When we woke up Saturday morning we decided to go to the arboretum and enjoy the day. It was a gorgeous day too and tons of people where there just soaking up the warm sun. We (well us and my Mom) invested in the family arboretum membership and it really has been money well spent. We definitely got our use out of it last year and I think we will even more this year. If you ever want to go we can get in 6 people and park for free.

The boys love to run wild there. They love climbing steps, finding sticks, throwing rocks and generally trying there best to run away from us. ;-) It's quite a workout keeping up with them.

Luke had fun trying to hang from this tree - don't worry Randy was holding him.

The tulips are coming up, but most haven't bloomed yet. The arboretum is so beautiful when all the tulips have bloomed. We are planning to go back in a few weeks to see them.

We have had such a crazy time with our house lately (the roof leaked really bad, which created an enormous hole in our living room ceiling). The boys and I were staying on and off at my parents while they were doing the repair work, so we really haven't had much time to really think about Preston's surgery tomorrow. That is probably a good thing! We did start his breathing treatments last Monday and he did so awesome. Within a couple minutes he was letting me put it up to his nose and mouth. I was shocked and really feel like God answered some prayers. He had a few treatments that he just was into to and didn't really get much of the medicine, but all in all I was pleasantly surprised and he did really well.

Preston's surgery is tomorrow at 11:30 at Medical City. He will be having the same anesthesiologist as last time and she was really great. They will be starting an IV steroid as they put him under and they are also trying to get an ENT to come in before they intubate him to insert a scope really quickly to look at his larynx. His pulmonary doctor feels like he may have a floppy larynx and they want to take a look at it. From what he explained it is supposed to be hard like the cartilage in your ear, but sometimes it is floppy and it can contribute to breathing issues when intubated. If this is the case it is something that he should outgrow.

His neurosurgeon is planning to wrap the cord up and bandage it to his head under a turban so that the thin part of the wire is under the bandages. This way the only part coming out will be a thick wire that will not break. This should take care of the wire breaking issue.

With the information we get over the 24 to 48 hours of pressure monitoring we should have the answer to whether Preston is having another cranial vault remodeling in the upcoming months or whether we can wait a few years. Please keep Preston and his doctors in your prayers over the next day or so. It will be relieving to know which direction we are headed and to know either way where we stand. Thank you for all the prayers in advance and I'll post again when I can.