Sunday, January 10, 2010

Today the boys had their 6 month check up even though they turned 6 months on the 30th of this past month. Overall I must say that today was by far the best appointment the boys have ever had mostly because nothing was negative. Can you believe that? The doctors only had positive information about both Jason and Reece!

Jason weighs 17.10 and is 27 inches. Reece weighs 12.2 and is 24 inches. They said considering Reece's size he is a good heigth. He is still off the charts with his head size, weight and height, but is almost tehre with height and the rest is increasing steadily which is good.

To begin I gave Dr. Smoot a brief update about what was has been going on and how Reece has been doing much better. Both of the boys were highly active so she was able to see them in action. She was also very pleased with the progress Reece has made. He is finally rolling over from his back to his stomach. He hasn’t mastered it yet, but is working really hard to accomplish the task. I was still worried about his strength and muscle tone, but he has really blossomed and Dr. Smoot didn’t feel that he would qualify for services.

They both had their 6 month immunizations and also got their flu shot. They screamed and fell asleep in the car and see to be doing just fine for the most part. Here are a few pictures from this afternoon playing after we got home from the doctors office:





...and then while they were playing I was cleaning the closet up and found their precious little coverups that were at one point in time to big for them in the NICU. Look how they compare now...


...and then my friend Sarah called and Reece I guess wore himself out while I was on the phone. Too cute!


Thursday, January 7, 2010

Genetics Today...

We went back to Texas Children’s today this time visiting Genetics with Reece. I expected it to be a quick visit, but I was wrong. I must have talked to a billion (okay like 10) different doctors/nurses/medical personnel. So here is a quick run down of what I know, don’t know, and everything between.

-Genetics doctor- wanted my history and mine and Ryan’s family history
-Genetics specialist- examined Reece…in addition to the hypospadius, webbed toes, mini hole in the heart, small size she said he also has a slightly turned up nose, droopy/slanted eyes, wide forehead/nasal bridge, small chin. In her mid sentence of “all possible sighs of…” I interrupted and said “ Smith Lemli Optitz Syndrome and she smiled and said yes but 9 out of 10 times with genetics a verbal prediction is often the wrong diagnosis. She absolutely loved him and was impressed by his muscular strength for his size. She said that it’s a great sign that he is so active and alert. She made the calls as to what kind of testing needs to be done and they are as follows…1. chromosome testing (blood work which was done today) 2. Blood test (which was done today and if positive a DNA test will be done) 3. Ultrasound of the kidneys (requires additional appointment- wants to do this because of the hypospadius kidney failure/problems is associated with it and the Opitz syndrome) 3. Spinal ultrasound (requires addition appointment- wants to do this to check the spot on his spinal cord to make sure that the nerve endings are all closed. Waiting to hear back if he is big enough for this, if not he will have to be sedated and a MRI will be done) 4. Check brain (this will be done when the spinal ultrasound/MRI is done) 5. Oral Plastic Surgeon- hopefully this will speed up the referral process that I am already waiting on.
-Genetic counselor- gave us lab paperwork, discussed lab procedures and sent us to the 3rd floor for testing
-Lab work- they drew blood which required 3 nurses and 5 different picks because they couldn’t get the vein. Poor baby was screaming bloody murder for about 30 minutes. It was terrible. Needless to say since he has been back to sleep and is doing just fine. They took 4 of the little things of bloods. He hated it and even made ugly pouty faces to the lab workers.

So what does all of this mean? Nothing, right now because we do not have any answers, just possibilities. One of three possibilities will happen…
1. blood work comes back normal meaning that there aren’t any missing, extra or abnormal chromosomes- best case scenario!
2. blood work comes back abnormal meaning there are missing, extra, or abnormal chromosomes that doctors are knowledgeable about- second best case scenario because that means that they are familiar with the condition, aware of possibilities and treatments.
3. blood work comes back abnormal with missing, extra or abnormal chromosomes, but are conditions that doctors know little or nothing about- worst case scenario because then it is just a matter of hit and miss. If it comes back with this being the problem then they will test both Ryan and I to see if by chance one of us is a carrier of whatever it is and see if it is possible to be a carrier but not be effected (which could be the case with Jason…Ryan or I could be a carrier for a syndrome but J didn’t get the DNA makeup and Reece did) These are all REALLY BIG IF’s!

So now we wait on test results, make appointments for ultrasounds, and go to other appointments. Overall Reece is doing really great in terms of his spitting up. He is much happier than he use to be and is slowly coming around with his motor skills. Hopefully my prayer is we just need to give him more time and he will catch up! It will take 3 to 4 weeks to get test results back. If it is all normal we do a follow up in 6 months if it is abnormal they will schedule us as soon as they can get us in and we will begin treatment if there is any and regular follow ups for disability. Yes, I know that “d” word sounds scary and may I just remind you doctors always prepare you for what might come worst case scenario…Only the “big man upstairs” as Dr. Rowe once put it can control outcomes.

I have too say that so far I am a pretty big fan of Texas Children’s. The doctors for the most part have been very proactive. I mean really I think we have just about hit every major branch in that hospital and praise God with all of our visits we still haven’t come across anything that isn’t correctable or has life altering affects! I am telling you God does work miracles and in the end of all of this Reece will be living proof. I think I am going to end this posting on that note and that my highlight of the day was I got a medical 2010 planner for doctor visits today free! Heck yes :P
If you have questions...leave them as a comment below chances are others are wondering the same thing!

Tuesday, January 5, 2010

Peas Make J Gag!

Jason had sweet peas with his cereal last night and his facial expression was to die for! He only gagged about 3 different times...he better get use to it because peas are what’s for dinner all week for him! I have a video on the camcorder but the file is too long for publishing. I haven't yet figured out how to compress the file to publish unless I take a bunch of really short clips. There must be a way to manipulate video clips...

Saturday, January 2, 2010

Giddy Up!

So when you’re a baby Christmas just never seems to end...wait what am I talking about the gifts for Ryan and I just keep coming too! Aunt BooBoo joined us at Mom's New Years Day for the traditional black eye peas, cabbage and the works and brought over the boys Christmas gift. A pony rocker complete with galloping sounds and the classic horse "nnnaaayyyy". Jason just didn't know what to think and was the amazed the most by the crinkle sound the mane makes...Reece of course just wasn't there yet but sat for a few minutes. This will defiantly be a hit for the boys when they are a little bit bigger in about 3 months! In the mean time they can practice being little cowboys with support.