Our Pride and Joy

Our Pride and Joy

Wednesday, November 20, 2013

Strength & Love

Hello everyone and welcome back to our blog, the blog I have time once every few months to update! :) We have had a busy last couple of months but we found out some news that I would like to share just so not only me and my family, but everyone else can join us on some much needed prayers for our sweet Watson. Craniosynostosis comes with other things that are not only involving surgery. When we orginally found out all this information on the Craniosynostosis (fusion of the skull) with Watson we were also told that when more then one Suture is fused that it could possibly be something involving a syndrome. Watson's front two sutures are fused which is a rare form of Craniosynostosis, because most of the time there is only one suture fused. Of course my first thought with my 2 week old is not only am I in shock my baby has to undergo a major skull and reconstruction of the skull Surgery but I know he is completely healthy and will be fixed right up after his surgery. We were told we could wait until his Surgery to undergo Genetic testing but the last few months we just decided to do it to get it out of the way, in case we needed to recognize something other then the Surgery. When the Geneticist had looked at Watson at 2 weeks old she said not to worry,  the one thing we need to deal with is his Cranio problems at this point. While meeting with the Cranio Facial Surgeon and Neuro Surgeon they of course educated us with what was wrong and how it can be fixed, and also how when more then one suture is closed it could possibly be a syndrome, but they let us know by looking at Watson there guess was it was less then a 20% chance of being a syndrome. Well as of a few weeks ago we did get the Genetic testing back and Watson has what is called Muenke Syndrome. I immediately started researching everything on this and found it hard to believe there wasn't a lot I could find. After lots of searching and speaking with the Geneticist we found that this was not discovered until 1996. Apparently when Craniosynostosis occured in children years ago they didn't ever get the gentics testing done, unless it was clear to the doctor there was something else wrong.  But what I have found is that there are very few things with this that could affect Watson. This occurs in 1 and 30,000 births, there is a 20% chance it could cause hearing lose, only 20% of children with this have mild delays, and the bones could have abnormal growths, which is why the bones fused and could cause them to fuse again once surgery is done. I never thought about anything like this happening to us when we decided to have children but now that it has I have learned so much on letting things be and knowing everything happens for a reason. This has made my relationship with god and my husband and children that much stronger and I know my sweet boy with be just fine, and no matter what struggles life brings you there is always hope. Watson will never be treated any differently then Weldon is, but deep down I know God made him special for a reason. Watson is right on track with all his milestones including sitting up, eating solids, reaching for his puffs to eat, and getting on all fours and rocking back and forth. Yes I think within a month or so we will have a crawler. At Watson's 6 month check up his hearing looked great and he was 19 pounds and 28" tall. He is in the 87% percentile and still growing like a weed! We are so blessed with our beautiful family and so very blessed to have the wonderful people in our lives that help us get through these tough times. Please keep us in your prayers with the months leading up to Watson's Surgery. Here are some pictures from the last few months..............
                        Our little Tiger :)
                                                                                                      Cool dude
                         Weldon LOVES his baby brother!


  1. You know as your best friend and sister in Christ that I am always praying for you and your family! You are my family and always will be and I know the lord is taking care and will take care of your sweet family! Love you guys and praying for you all and for baby watson! I am excited to be able to watch your sweet boys grow up into the wonderful children God created them to be! You have a beautiful family and The lord has wonderful plans for all of you and i'm grateful to be apart of that! LOVE YOU and praying!

    Psalm 147:3-5 He heals the brokenhearted and binds up their wounds; he determines the number of stars and calls them each by name, Great is our Lord and mighty in power, his understanding has no limits.

    Exodus 14:14 He will fight for you, you need only to be still

    Psalm 46:10 Be still and know that I am God, I will be exalted among the Nations, I will be exalted in the earth.

  2. You will forever be Family to me! Thank you so much for your encouraging words! I am so lucky to have had you by my side since birth :) Love you!