Our Loves

Friday, February 26, 2010

Birthdays, Birthdays!!

This past weekend we went to Stephenville for my cousin David's son, Caleb's 2nd birthday party. We played in the park and everyone had so much fun. Luke really loved to launch himself down the slide head first and Preston had a fun time exploring the park!! Caleb had very cute elmo and cookie monster cakes and he got lots of cool presents. We had a great time celebrating with Caleb and we had a nice dinner at a fun hamburger place after the party called Grumps. Luke really liked the corn nuggets I got. ;-)

We celebrated my birthday on Sunday because we were in Stephenville on Saturday. Caleb's birthday is on the 19th and mine is on the 20th! So we have a lot of birthday fun to look forward to in the future. We went to the Fort Worth Museum of Science and History Sunday afternoon. I hadn't been there in forever and wow has it changed. I wanted to go there because I heard they had a new Children's Museum exhibit. We had a good time and you always know it's a fun place when there are tears when you pull them away to leave. ;-)
Luke had a lot of fun playing with the cars on this little race track and Preston loved pushing the buttons to make the bubbles shoot up the tubes. They both really liked to push the little grocery carts around and play with the cash register. We had a very busy weekend, but we had a great time with our cousins and made a lot of great memories!!

Next week we will be starting Preston's steroid treatments in preparation for his surgery on March 8th. Preston had some respiratory issues in recovery after his last surgery and he had respiratory distress in the PICU several hours after his big head surgery in November '08. Preston was evaluated by a pulmonary doctor 2 weeks ago. They feel like his lung capacity is below normal (which isn't that strange since he was premature), that he has wheezing, and they feel like his trachea becomes inflamed when he is intubated for surgery. So they wanted to start steroid breathing treatments the week before surgery and a bronchial dilator to help prepare his lungs and trachea for the intubation during his surgery. His doctors don't really know the long term implications of all this. He may have asthma or might be able to outgrow all this. We sure hope so!!

We ask that you say some prayers that Preston will tolerate his upcoming breathing treatments. As you may know Preston has severe oral aversions. He does not eat any food with texture and will not let you touch his mouth or put things near it. He will only put his bottle in his mouth and will sometimes let you feed him pureed baby food on spoon. This is most likely from all the vomiting he went through his first year and also the feeding tube he had repeatedly put down his nose during his hospital stay before his first birthday. It took a lot therapy to get him to accept a spoon with pureed food and even that he does not do very well, so I am worried about these breathing treatments. We have tried the breathing treatments once before and I got more of the treatment than he did. We will be using his feeding therapy techniques to try and get him to take the treatments. We would definitely appreciate your prayers because these treatments are very important to help reduce inflammation while he is intubated.
I hope everyone has a wonderful weekend and I will report back on how the breathing treatments go.

Saturday, February 13, 2010

Welcome to our Blog!!

Welcome to our family blog. We have decided to move to a blog and shut down the boys website. I basically stopped updating the boys website a year ago so now we are going to see if I can stay on top of a blog. We shall see! ;-)

The boys are both doing pretty good. They started a day of preschool in September and have really loved it!! They have the sweetest teachers and they love to play outside when the weather is nice and love to do art projects. Preschool has really helped with their verbal skills. Luke is a little jabberer now and Preston has started to consistently say a good amount of words, too. We had a great Christmas and we were really so happy to have not spent any time in the hospital in 2009 (besides day patient feeding therapy, but we don't count that).

Preston has had some new issues that have come about with his head. At Preston's 1 year follow-up appointment, in November, much to our surprise, his craniofacial surgeon was not pleased with the growth/shape of his head or the size (on the large side). Preston's head has not responded to the cranial vault remodeling surgery in the expected way for a child that had 1 fused metopic suture. His skull has not gone back to the shape it was with the fused suture he had when he was born, but actually it is growing somewhat irregularly in a new way. Which, from what we can ascertain, is not very typical. So his doctors were in a wait and see mode, mostly thinking that within the next 3 years he would likely need another surgery. They weren't really thinking about doing anything at the moment unless we saw a plateau in his development or any new problems arose.

After much discussion amongst Randy and I and his other doctors, we asked Preston's craniofacial surgeon - the main doctor following this issue - to order an MRI because we felt uncomfortable with waiting and seeing. His cranio dr is a wonderful doctor and ordered it without question. That was done in January. They did find something a little concerning with his MRI. His ventricles are smaller than they were before his surgery in '08. This can be a sign of pressure on Preston's brain. His craniofacial surgeon consulted with his neurosurgeon and they decided that he needed to have an intraventricular catheter placed for 24 hours to monitor the pressure on his brain.

This is called intracranial pressure monitoring (ICP). His neurosurgeon makes a small hole in Preston's skull while he is under general anesthesia and they thread a small catheter down into his brain. It stays there for 24 to 36 hours while a monitor records pressure readings. He is awake and trying to have as "normal" a day as possible, in the hospital, so that we can get accurate readings. This surgery was done on February 1st, but unfortunately the catheter broke after 3 hours. The 3 hours recorded were within normal limits, but his doctors really want to see what the readings are while he is sleeping (which is the most concerning time) so we are having to repeat this surgery/monitoring on March 8th.

That pretty much gets us caught up. We were pretty upset that Preston was put through a surgery that didn't really give us much information, but we are both thankful that he is a tough little guy and we know that God will watch over him again in March. It is hard to understand a lot of things that life brings, but we try our best to always have faith that God is using all things to make us all stronger and we truly strive to be thankful for all the we do have. Every time we go to the pre-op appts for Preston's surgeries we see other children who have much more severe craniofacial disorders than Preston and it is really so moving. You can't help but feel grateful that it is not so much worse.

Well that's all I have for right now. I will try to stay updated and post pictures more regularly! Have a great weekend and the next time I post I won't be posting as a 30 year old - I'll be a 30 something (my b-day is Sat) - crazy!!

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