Tuesday, September 16, 2014

Happy First Birthday!! We survived.

It's been a whole year since my sweet baby boy was born. He's one of the most amazing things that's happened in my life. In fact I'm blessed to be his momma.  But I sure didn't think that the night he was born, when the pediatrician told me they suspected Down syndrome. In fact that joy that you feel when your baby is born quickly turned to fear and I cried non-stop for the next few days. Looking back It makes me so mad that I let Satan steal my joy during that special time. It took me longer to bond with Connor but it was only out of fear of the unknown. I was protecting myself from being hurt. I knew nothing about Down syndrome. But man, do I love this baby! I can't stop kissing him. So if I could tell a mommy that is just finding out that their baby has DS. I'd tell them congrats, its gonna be ok. You've just been given an invite to one of the most amazing communities. You're next year will be challenging but worth it all. You will be sad when your friends kids crawl, walk, and eat table foods on time. But you will get to enjoy your baby a little longer. And when they do hit those milestones you will celebrate like you won the lottery. And before you know it, a year has passed. Connor you light up the room with your smile and your zealous love of life. I love that you would rather interact with people then play with toys. Gods got big plans for you, my son. And I can't wait to see what all is in store for you. Happy First Birthday! I love you more then you will ever comprehend. 

Friday, September 12, 2014

Update Friday

Well, the Eye Doctor went really well. He has healthy eyes and they are where they should be for his age!!! Woohoo. We went to the University of Houston Eye Clinic and they did a fantastic job. Its amazing how they can tell if a child is having difficulty seeing when they are too young to read. 

Our Pediatrician appointment went good. There are just so many unknowns.  I asked most of my questions, like why would he be fine and then all the sudden this is showing up and he is now in pain? Could this be an allergy to milk? Could the congestion be caused by the facial structure of a child with DS? So long story short. She said if we try all these things at once, we won’t know what is working and what is not. We decided to try Prilosec for 10 days. If we see a difference great, if not then we can take him off it and try the next thing. If it does work, we can take him off every few months to see if there is still a need. I hate drugs and giving my children any meds but I feel at peace with this decision.  

She said that even though the congestion sounds like it is in his chest it isn’t. She said that his nose and ears look great. But we will use saline when we feel he is a little more congested. We see the ENT on Sept. 29th, so I will further discuss with him. 

We also received the RX for the Sleep Therapy. So I will work on getting that set up. If you are reading this and have experienced any of the problems we are having, please feel free to chime in.

Oh and I just turned to look at Connor and he had gotten up on all fours and held for about 3 seconds. Who knows maybe he will be crawling in the next month or so. 

Again, thank you for your prayers and love for our family and Connor. 

Thursday, September 11, 2014

Pray for us tomorrow

I've got a busy morning with Connor tomorrow. We have a Eye Doctor appointment at 10am. at University of Houston Downtown. They specialize in kids with disabilities. This is just a routine exam to have a base line. So I'm not expecting any concerns to arise.

But we are squeezing in an appointment at 8:30a.m. to see our Pediatrician. This came about because of the concern by those that care for Connor at Rise (teacher and therapist). Connor's always had congestion but it has seemed to gotten worst and if you put your hand on his chest and back you could feel the rattling today. Connor's congestion has always bothered me but it has become his norm.  We do have a swallow study set for October 3rd, but his Occupational Therapist (OT) and myself both agreed that we feel like he needed immediate attention regarding the congestion instead of waiting for the test or his 1 year check up. The OT's concern is that he either has Acid Reflux or is Aspirating. Or could it be a milk intolerance? Or could it be his skeletal structure of the mid-face and of the throat area that tends to be rather cramped so that drainage of normal mucous secretions is messed up. When Connor first started Rise the teacher pointed out that when he got up from his nap he seemed good and then after he would eat he would get congested. So, please pray for the Doctor and that she will have wisdom from God when we are talking through this in the morning. And that we can put together a plan that will be perfect for Connor. Pray for me! It really upsets me when I know my baby is struggling and I just want to do the right thing and get him cleared up.

I will also have the Dr. write a prescription to do a sleep study. The teacher noticed that when he sleeps at nap time that he stopped breathing a couple times. This could be due to the congestion. That is at least what I'm praying for. So add that to your prayer list as well.

Oh and I can't believe this little snuggle bunny is turning ONE on Tuesday. Ugh. I look at this picture and I want to run upstairs and squeeze him...LOVE HIM SO MUCH


And I love you sweet family and friends!