Saturday, June 14, 2008
Thursday, June 12, 2008
Saturday, May 31, 2008
Tuesday, May 27, 2008
First of all, we would like to thank each and every one of you for your thoughts and prayers. My heart is warm just knowing there were people I didn't even know praying for our little guy. It is such a blessing to have family and friends that shower us in prayer! The Lord truly hears them. We are blessed beyond belief with such a beautiful child.
This has been a LONG 8 weeks of testing and waiting. I am so glad to be over with it. For those of you who have not gotten an update, here is our latest news:
Cat Scan was all clear
Kidneys were all clear
Eyes and retinas were all clear
Genetic blood tests were all normal!!!
Our Neurologist said that 80% of the genitic blood test picks up a positive diagnosis, the other 20% that is negative, the person either does not have it, or the gene was not strong enough to be detected. so we will never have an answer on whether or not he has this disease. We do know that the Shagreen patch on his back is closely associated with the disease, but in some cases is not at all. We are believing that will just has a weird patch of skin on his back and it is NOTHING else.
Anywho, with Tubular Sclerosis, tumors can start to grow later in life and since we don't have a difinitive answer, Will is probably going to have to go through these series of tests once a year, probably forever. Every year that the tests come back clear, it is unlikely that he has TS.
We have a follow up appoiintment with his Neurologist on June 12th. Probably to discuss the plan. As of right now, I believe we are clear to have more children.
We are so happy and elated with this news. Please continue to keep our Will in your prayers as we hope nothing EVER arises from this Shagreen patch. Again, thank you all!!!!!!!!!!
Love- Leslie & Bryan Fiscus
Friday, May 23, 2008
This was at Monica Carrion's graduation party. He looks like such a big boy here!
This was before Ace Bernal's first b-day.
Tuesday, May 20, 2008
Drumming at a show!
us at christmas!
Oh, did I mention that he is a Great Baseball player! Well, he's about the best I've ever seen!
I LOVE YOU REX! You are Amazing and I am so proud to call you my brother!
Wednesday, May 14, 2008
first of all, thanks to everyone who either called, emailed, visited, prayed or thought about us this last week. this has been quite an experience and looks like this is just the beginning of our journey.
just wanted to send a quick update on miller and i will try to give the cliff's notes version.
we were released from the hospital on monday after being in neonatal icu for 6 days. the diagnosis is that he has a congenital heart defect. tetralogy of the fallot --- that is the clinical name of his defect, and it involves 4 abnormalities of the heart. basically to put it in simple terms, he has a hole in his heart between the left and right ventricles (a murmur) and he has an obstruction in his pulmonary artery...both of these must be repaired. so, we are on schedule for open heart surgery in the next 6 months or so. we are on weekly visits to the cardiologist and the pediatrician so he is being closely monitored.
the good news in all this is that his condition can be repaired with surgery. of course, open heart surgery scares us beyond belief...in fact i have not even allowed myself to think about the surgery at this point...we are just taking it one day, one hour at a time.
so for the next 6 months our job is to keep him healthy and get him to grow strong for his upcoming surgery. we are trying to train his brothers not to kiss on the face and to scrub down with purell every chance they get. we are basically on self-imposed house arrest as to avoid exposing Miller to any unnecessary germs.
he is beautiful and huge...he weighed in at an amazing 9lbs 5 oz...wow!
please keep us in your prayers as our journey unfolds. it is out of our hands and we trust that the good Lord knows what He is doing.
again, thanks to everyone for all of your thoughts and prayers and please keep praying...we are not out of the woods yet!
heather, matt, tyler, maverick and miller schomburg :)
Thursday, May 8, 2008
I just am amazed at how much access God gives us to His love and encouragement and comfort at times like these and others. We never realized how many connections (churchwide) we have all over this area. That baby had over seven churches praying for them last night and fortunately the hard nights to come.
As far as we know, I spoke with Heather late last night and she is breaking down. She's hurting from the C-section, she's having to pump all the time, she doesn't understand all the information that's being thrown at her about the baby's condition...she's exhausted! The baby has three different congenital heart defects...two of which she could roughly explain and the other she doesn't know much about. First is a large mur mur (hole), the second is some sort of double ventricular defect where there are two arteries coming out of the same side of the heart??? It is not a matter of "If" the baby will have surgery it is when. Luckily he is healthy and as of right now, not on any machines, O2 or supportive tubes!!! His breathing is stable and he is eating and sleeping well. In other words, best case scenario and probably healthy enough to go ahead with the surgery soon. Heather and Matt are staying in the Ronald McDonald house next to the hospital and the cardiologist told them to "Settle in", it would be at least two weeks! Know they still have the other two boys at home. Please, please keep praying and I will do my best to keep you abreast of the situation! She did mention that the doctors should be in and have a decision about surgery (hopefully) by noon today.
Thank you for your love and commitment to God. Thank you for praying!
Specialists today will conduct more testing and heart surgery will be performed either today or tomorrow. PLEASE pass this on to everyone. This young sweet family needs all the prayers they can receive right now.
Monday, May 5, 2008
We took Will to Houston to have his Retina's checked and praise God everything is great with his eyes. This whole "eye appointment" thing has been an issue.
We were referred by our Neurologist to the local Pediatric Ophthalmologist (yes, Corpus only has one) We were told, literally 7 people, that he was not a very nice man and that they would never take their child back to him. Bryan and I thought to ourselves that if we took Will there and had a bad experience, it would be our own fault because we were warned. Plus, we would never want to put Will through a "not so kid friendly" appointment again!
We were referred by a friend to Houston Eye Associates. They were great with Will (and us). Even though he Freaked out! Dr. Gonzalez assured us that his eyes were normal and that he wanted to see him in 6 months. YES! the drive was worth it!
Sunday, April 27, 2008
Will update: Still no test results on genetic bloodwork and we have an ophthalmology appointment in Houston this coming Friday. Pray for that PLEASE!!!!!
Sunday, April 20, 2008
Will sits for hours in front of the tv watching practice videos from our church worship service. He can name all the musicians and knows what they play. Will currently has taken quite well to the drums, ELETRIC guitar (thanks daddy) , Keyboards, and vocals.....well...... We think he is the next American Idol! His favorite song is "Happy Day"! This video is kinda long, If you can make it to the end, it is worth it!!!!! Sweet Will! "My Savior Wives (lives)" ENJOY!
Thursday, April 17, 2008
Will had a CT scan of his brain and ultrasound of his abdomen done yesterday. It was a traumatic experience for us all as we didn't have a very "kid friendly" radiology tech and they didn't give our little guy ANYTHING to ease his fear and anxiety. I don't understand why not, but, whatever...... Needless to say, we were anxious to find out the results, so I called this morning and left a message for them to call me back with results. Well......PRAISE GOD, both the scans were normal. The nurse probably thought I was a fruit cake as I just bawled my eyes out, shouting from the top of my lungs praising God and thanking him for NO TUMORS! OH what a glorious day. My baby boy's brain is okay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So... 2 tests down, Hopefully only 2 more to go. We have an ophthalmologist appointment coming up to check his retinas and we are still waiting on his genetic testing to come back. We are trusting the Lord that these tests will all come back clear as well. Please continue to pray for our sweet boy! Oh how I want to shout it to the world that GOD IS GOOD....ALL THE TIME....ALL THE TIME.... YES HE IS GOOD!
I just want to thank all of you all for showering Will with your prayers. We are feeling them and the Lord is answering them.
Our love to you all!
Tuesday, April 15, 2008
Monday, April 14, 2008
When Will was 5 months old, I noticed a patch on his lower back. It looked like raised flesh colored stretch marks. When Will was a year old, my pediatrician asked that I see a dermatologist. The Dermatologist said that it was a Nevus of some sort and that it would all come together and turn dark Brown. My Pediatrician thought I should get a second opinion. We got one and she referred us to the Neurologist. She said it looked like a Shagreen Patch.
Will’s Neurology appointment was on Wednesday, April 9th. Will was diagnosed with a Shagreen patch which is commonly associated with tuberous sclerosis. He is going through genetic testing to see if he does have tuberous sclerosis. If he does, his case could be very mild (no real problems at all) or severe (possible growths on his major organs including the brain.) Here is a brief description…
Tuberous sclerosis--also called tuberous sclerosis complex (TSC)1--is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It commonly affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.
We know for sure that Will is not delayed in his cognitive development at all. He could name letters and numbers at 1yr and ½ (we love to show that off!) At two he could match up your car with one of his from his Hot Wheels collection. He is just so brilliant! Of course, I’m not biased at all! He does not have behavioral problems, and seems quite healthy. Our prayer is that he has NOTHING at all!
Will has numerous appointments that will further test for TSC and tumors. Please keep us in your prayers as we learn more about Will's condition and TSC.
I will keep you informed as we all learn more.
Wednesday, March 5, 2008
My husband was in hog heaven! He was such a nascar nerd! He loved EVERY minute of it and I loved watching him enjoy something so much! See the stands in the background? the seats were all full! and there was another stadium seating across the field that was full too!
Oh.... did I mention that we were in Mullet America? EVERY redneck in the universe was there! What a sight!!!!!!!
Although we had a great time away together.... We sure missed our little boy! It was great to get back to him.
Monday, March 3, 2008
Christmas was great this year! After our christmas services at church, we normally spend the night with Gi Gi (my mom) on Christmas eve, But we decided to spend the night at our house this year. Everyone came over early that morning. We still did our matching pajama tradition. we were too busy taking pics of Will and his NEW DRUM SET, that we didn't even get a family shot! Boy the $20.00 it took for santa's elves to make that drum set was worth all the money! He plays it everyday! Along with his doodlebops guitar and keyboard! I have no boubt that Will is going to be very musical......he already is!
Just had to put this pic in here.... he is so darn cute, and quite the wiz at his numbers, alphabet, shapes and colors! He also has a new fascination with matchbox cars! he has about 100 of them and will spend hours lining them up and parking them and reparking them and reparking them! we watched an entire Dallas Cowboys game as he lined up his cars! Not one interuption. Kinda weird, but the Dr. says it's normal! I think he may have gotten that tiny bit of OCD from his Daddy! HA!
We took an evening bay tour and got to see Alcatraz and the Golden Gate bridge. I felt like we were in a movie! it was so cool to see a part of history that was a little creepy, yet so amazing! The Golden gate Bridge is HUGE! What great memories we made!