Connors sleep study!

The sleep study went really well. Considering he had so many things attached to his body, head and face! Don't get me wrong it wasn't a cacation but it also wasn't a nightmare. So many people told me that the techs would come in a lot and the room wasn't comfortable etc. but our tech was awesome and only came in when one of the electrodes fell off. Connor completely woke up once, moved around a lot and made some noises making it hard for this mamma to sleep. But we survived! Let's pray we don't have to do that again. Oh and it worked out that we were the only ones there. 

As far as the results go I couldn't get in until January 7th. So unless there are major red flags I have to wait. 

Here's where you can pray: that everything is good and that he wakes in the night because of congestion which makes it hard to breathe. Could you also pray for Connors congestion to clear up? I do feel it's getting better.  We are getting tubes on Dec. 2 and they will be draining the fluid and possibly removing adenoids. Please pray everything goes smoothly and we won't have any complications. 

Love you guys!!!

Horrible pic but this was him waking up. Jason said he looked like he had been in a car wreck. It might just be me but is this kid never not cute? 

A well over due update

Do you ever have the feeling that time is just slipping from your hands and you have no control? That's how I feel about this past month.  In October we had 11 appointments including speech and physical therapy appointments, well check ups, sick appoints, and multiple appoints with Specialists and getting blood drawn. That didn't include Connor's therapy.

We also made the decision to switch to Private therapy for Speech, OT, and PT.  Which means we will be meeting at a location instead of having therapy at our house. I'm not excited about being gone so much from the house but I'm excited about the progress we are going to see. Starting next week my weekdays are going to be very busy.  Connor's school is Monday-Friday. I'll get him out of school early on Mondays for Speech and OT. Then Tuesday and Thursdays I'll pick him up early for PT. Wednesdays we see the Chiropractor, thank goodness that takes all of 5 minutes. Oh and Tuesdays we see an individual that works on Connor and him hearing sounds. But thats at the house. Sounds like a lot, huh.  Thank goodness I have my parents to help with Hunter. That would be a lot to drag him around too.

Speaking of Hunter. Tuesday the 18th, my sweet boy turns 3! I can't believe it. He's just so much fun to be around. I love him so. Its been fun seeing his personality develop and watching him figuring out what he likes and doesn't like. Its also been neat seeing him slowly fall into the role of a big brother. He's really going to be the best big brother for Connor.

Back to updating Connor. We have two big appointments coming up. We have a sleep study next Wednesday. Please pray for Connor that it goes smoothly and that they don't find any major hiccups that can't be easily fixed. We've also decided that we will be putting in tubes and draining the fluid in both ears. My prayer is that will fix Connor's hearing. I'm a little nervous about him being sedated. We had scheduled this for the first part of December but it would be out here in the suburbs. I'm rethinking my decision and will probably change it to January (first available) in the medical center. This is also dependent on the approval from the cardiologist.

I have about a hundred more things that I could update you on but I think I've covered the most important stuff.

Before I go. A special thanks to everyone that has donated to the Rise Silent Auction happening a week from Thursday! I have the best support system for Connor.

Pumpkin Patch

Halloween

Doctors Doctors and More Doctors

Ahhhh. October is becoming the month of Doctor appointments. Last Friday we had our swallow study which showed he is aspirating on liquids. What this means is that liquid is entering Connor's lungs. I feel God's hand on Connor because a lot of times aspiration causes pneumonia and could have put him in the hospital. So props go to our Occupational Therapist at The Rise School.

Today was our appointment with a neurologist. At first, I wasn't sure I was going to like him. There was no one in the waiting room and from the time I arrived until I saw the doctor was close to an hour. But he totally redeemed himself when he walked in the room and started interacting with Connor. The outcome of this appointment is that we are waiting for a call to set up a sleep study. I hope to complete this the first part of November.  I'm not looking forward to this but I'll take it for the team. Its the least I can do since Jason agreed to Potty Train Hunter. I know, I know. My husband is the bomb. I'll be going to get some lab work done on Connor on Friday. Pray that the person taking his blood is good. They will grab blood for a complete CBC, Thyroid, and Celiac Disease. He also wants Connor to see a pulmonologist. This is a Dr. that will look at lung conditions and disease. We see this Doctor on Thursday of next week.

So on top of these Doctors we have a follow up with the Cardiologist, The 12 month check up, oh and we saw the ENT dr. earlier in the month. I feel like we are back to the first 2 months of Connor's life. Please don't get me wrong. I'm very thankful to have insurance and have all these appointments to constantly be monitoring Connor.

Our God is good! This isn't an easy road I've been given but the things that are worth the most are never easy. Please join me in Prayer over Connor's heath- mentally, physically, emotionally and spiritually. Pray that God will give wisdom and His knowledge to everyone that comes in contact with him.

Blessed to be Hunter and Connor's Mommy,

Mandy

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. 

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. 

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!

Hello Rise

So we just completed Day 4 of Rise. I love this school and I hope I always feel that way. (I hear some of you now, I know it's only day 4) I love that the director and the staff are in the lobby and outside for drop off and pick up. I love that on day one the director and other staff not only knew Connors name but mine and Hunters as well. I love that I have complete confidence in his teachers and staff. His teachers have been there 3 plus years. I love that they love on Connor like he was their own. I love that he gets group therapies. Gosh I'll have to continue to add to this list. But you know what I love the most? That they delight in his accomplishments and that they are there to push and encourage him to be his best. Look at what our little guy accomplished today? That's right, he not only drank his entire 7 oz of milk out of the honey bear but he held it himself. Way to go Connor. This pic was taken before school. But I can't figure out how to upload the video of him doing it. Boo