Do good at church...Get a gun!?!

First let me say...if you read that last post, Sorry! I had just received the e-mail about the "hope" study and the comments got me wound up! I intended to inform you about what happens when you are are good in church, instead I got on a rant about the lack of "hope" our doctors had given us! :(

Anyway...several weeks ago during the hurrication, David got paid for picking up the branches from my parents yard. Last week he spent that money on a transformer thingy and had one dollar left. On Sunday morning, after we dropped Christopher and Jacob off in the nursery David went to "big" church with us. Brad was going to give him some money to put in the collection plate. (That is David's favorite part of church!) David pulled his own dollar out and said he wanted to put his in. Without being told or promted, he brought his last dollar to give at church. We are both VERY proud of him. When we got in the car Brad told David that since he gave his last dollar to church, we could go to Cabela's and get a gun! David has been wanting another gun for a long time. My parents got him one for Christmas a couple of years ago. He plays with it often and it is broken in two places. Brad and I are not big fans of guns (especially for little children) so I didn't think he would be getting another one. Brad totally surprised me by getting him a new one that shoots little pellets. David has played with it non-stop. I just think it is kind of funny that you get rewarded with guns for being good at church! :)

Warning: Venting TODAY!!

HOPE!?!...I am in a bible study group for "special needs" parents. hmmm, I'm not sure how or why one child is classified as "special". I never got that....implying that a healthy child is not "special"!?! I can't think of a better word for children who require more doctor appointments that the average child, but I'm not too sure if "special" is the best word.

Anyway... the bible study is lead by one of the neurologist in the office that Christopher visits. ...For those of you that may not be familiar with why we have "neurologist" added to our team of docs.. Christopher was delayed in most of his milestones (rolling over, sitting up, crawling and the most obvious ones were walking and talking). At two years old, the only words Christopher would say were"eat" and "dada". Christopher's neurologist (not the Bible Study Neurologist!) told me that because Christopher's oxygen saturation levels were low the first couple of months of his life (prior to his heart surgery) and since he had been in a coma for an extended amount of time - he probably has brain damage. At two years of age, he was operating on a 9 mth old level. Brad was not at the appointment with me and in order to do brain scans he would have to be sedated. Because of his heart issues, he is in a higher risk for having complications with anesthesia. Since I was alone and don't handle stress well - I voted no brain scan. The information from the scan would not correct the problem - we would just know...yes, the lack of oxygen has damaged his brain. Duhhhhh. After I refused the brain scan the neurologist proceeded to tell me that Christopher is mentally retarded... One may ask...hmmm...How in the heck does she know that if I just REFUSED the brain scan!!?????!!

This may also remind you of the time when I was pregnant with Jacob (just a few months after Christopher's open heart surgery in Boston!) and the Maternal Fetal Doctor told Brad and I that Jacob had Trisomy 18. Trisomy 18 is a fatal chromosome disorder. He went so far as to tell us that IF Jacob was born alive he would not live past his first birthday. Most children with this disease are stillborn. After Brad and I refused to do anything about it (other than pray and cry) the next month we were told...the chance of him having it was much lower (still high - but lower than the previous month). Of course our little Jakey did not continue to grow according to their standards and he was "taken" early. But look our Jacob now!! Healthy and 18 months old....hhmmmm, isn't 18 mths more than ONE YEAR??????

One more story...When I was pregnant with Jacob, during the time we thought he had Trisomy 18, Christopher had an infected eye and was very congested. It was on a weekend and right after his heart surgery so I was concerned. I made an appointment for one of the doctors at his pediatrician's office (not our normal pediatrician) and she diagnosed Christopher as having neuroblastoma. A fatal pediatric cancer that attacks the spinal cord and stomach. She wrote down the name of the disease for me to start reading about it and told us to make sure we come back to see our normal doctor on Monday morning. I was too stressed to even look it up, so Brad did. He called me from to work to explain what it was. hmmm, after he read the symptoms we realized that Christopher did not have it. We went to see our pediatrician and she apologized for Dr. Fletchas ignorance and assured us that Christopher did not have anything more than a cold! hmmmm....one may ask..."How do you confuse the common cold with neuroblastoma?"

OK...so back to the bible study...next week the topic is Hope. In order to prepare for next week the comment was made, "I feel that doctors have an obligation to give the reality of individual situations, and not provide parents with a false hope or false sense of security that children will be fine or normal" I love that the Doctor is leading the bible study and I found it very ironic that she would not want to provide parents with a false hope or false sense of security. When I feel that many of the doctors (especially in our case) are doing just that! Don't get me wrong...I DO want to know the diagnosis for my children but don't put unnecessary labels on children that hamper their self-esteem and give them excuses to give up without any medical evidence that something is wrong. After hearing the murmur, performing an EKG and echo cardiogram, Christopher was diagnosed as having four complex defects in his heart. I kept listening to Dr. Brumund explain the disease and the whole time I was wondering...Is this life threatening? I didn't know how to ask him other than by blurting out "Is he going to die??" and I was too scared of what the answer would be. I love that Dr. Brumund has never given us a false sense of security or false sense of hope. He is by far the most trusted Doctor on our "team". He has been honest and given us the life expectancy of most children with this disease BUT also gave us hope and told us how fast technology changes and he has encouraged us to let Christopher live a "normal" life...just like any other child. You never know how long your child will live (healthy or not!) - but why not make the best of each day you do have? If they enjoy being active, let them. If they want to try something new, let them. Let him live!! I think by doing that we have seen how Christ lives in and through us. How blessed we really are and how faith (or lack of!) can change things!!!

It is hard not to believe in God, when you see my "nine month old level", "mentally retarded", cardiac defected, "cancer" kid that is running, climbing, speaking to me in full sentences and acting like any other 2 1/2 year old child. Sure a lot of it has to do with the incompetent doctor staff misdiagnosing things. But I think a lot of it has to do with our "Hope" and Faith. God has some created some very talented physicians, therapists and surgeons and for that I am extremely thankful!! And by the way...Jacob seems to be just fine too! ;) He does not have Trisomy 18!

Hmmm...How 'bout Jakey???

Today is Jacob and Christopher's first day of Mom's Day Out. I thought they would do better if Brad brought them. Ok - I can't fool y'all. I thought I would do better if Brad brought them. I ended up going to work before they left. He called to say they did horrible. Both of them were crying. Surprisingly, I am not too upset. Christopher cried a lot in the beginning last year and then LOVED going. I think it is just going to take a week or so for him to get used to it. Jacob on the other hand, has never been left with anyone else - other than the sitters at our house and church nursery. He may take a little bit longer to adjust. I will be heading over there shortly to pick them up and see how their day went. I attached a picture I took with my phone earlier today.

I just wanted to share a quick story. Yesterday while David was in school and Jacob was taking a nap. Christopher decided to dig through his new school supplies and take the crayons out. When I walked into the kitchen, the floor had crayon markings ALL over. I asked who colored on my floor and Christopher without even thinking said, "Hmmm, how 'bout Jakey?" I still didn't have it cleaned up when Brad came in and Christopher stuck with the story that Jacob did it. When I told Brad look how pretty Jacob colored and then I asked Christopher which one he did...he ran to one of the spots and said "THIS ONE!!". Ooops - Busted!!! :)

Do you all remember what happened seven years ago today? The World Trade Centers and Pentagon Tragedies, my boss at the apartment complex laid all the entire office staff and.....Brad asked me to marry him!!! I obviously said yes!!!! Four months later we were married and seven years later, we're living in Baton Rouge with three little men.

Evacuees...

Sorry I haven't updated in a while. We left last Friday to run away from Gustuv. We packed up as much as we could in the Tank (including Mae Mae - the stinky dog!) and headed to Dallas. We never travel with a dog and so when it came time to check in the hotel - we were reminded that dogs can't stay in hotels. Oops!! Mae Mae (along with several other evacuee dogs) ended up sleeping in the truck. Please don't call PETA...we checked on her several times throughout the night and she was fine! While we were in Dallas, Matt and Cheryl were gracious enough to let us stay over there a couple of nights. The boys had so much fun. We ended up going boat riding with them and even Christopher ended up riding in the tube this time. I'll post some new pictures in the next couple of days. I'm too busy unpacking and preparing for Ike today!

The day after the storm hit, we met up with my parents who were also evacuating up there. We followed them back to Sulphur - what a LOOOOOONG trip back. The traffic was much worse returning than it was leaving. The boys and I ened at my parents until last night. Our area was hit pretty bad. Thankfully we don't have any damage, but many people around us do. I was planning on returning home as soon as the power came back on (Saturday) but when I informed David that we had power he was upset. He mentioned that we couldn't leave yet because he did not get to see Grandpa's tree stand. David LOVES anything that has to do with the hunting/camping or the outdoors. He didn't want to miss the opporunity to see a tree stand. We ended up having a fun week. The boys went boat riding, saw a duck blind, saw a tree stand, went to the beach (even though it was disgusting!!), rode a four wheeler.... We have a vacation scheduled for next month and hopefully it will supercede our evacuation trip! :)

This morning we watched the weather and it looks as if Ike could come here. I am not one that stays around for storms-so just in time for our return, I booked a cabin in Gatlinburg for this Thursday through Sunday. If anyone wants to skip town with us we have plenty of room. It has three bedrooms, two baths, hot tub, pool table, fooseball table and air hockey table. What more would you want??? I bought travel insurance for it so we don't have to go if the storm heads elsewhere...but it was so pretty and looks fun enough to go anyway!! I'm not too crazy about an 11 hour drive right now though! Hurricane season...good times!!!



I'll update soon. I have too much to do today...wash clothes, unpack, reschedule Chrisotpher's appointments that we missed... this iis just so much more fun.