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

Why My Boys Take Fermented Cod Liver Oil

I've been wanting to write this post for awhile. Specifically for a friend whose daughter has eczema. I read all kinds of health blogs and have known we should be consistently taking FCLO because of all the benefits. I bought it when I was pregnant with Hunter but couldn't choke it down. So about 6 or 7 months ago I started Hunter and Connor on FCLO. At the beginning I had some resistance from Hunter but now he takes the chocolate flavor like a champ. And Connor, he's just a stud. I have him taking the unflavored liquid FCLO. You know, the stuff that I couldn't get down. Hunter has eczema and I've seen a huge difference in his skin. We haven't seen any eczema in Connor, so I'm hoping its the result of him taking FCLO preventatively.

So here's why we take it:

1. Its Rich in Vitamin D-

• This supports Immune health and fights infections (Connor needs all the help he can get). 
• Cancer Prevention
• Low levels of Vitamin D are associated with thyroid (DS kids are known to have thyroid issues and I'd like to do all I can to help prevent)

2. Omega 3 fatty acid

• Reduces inflammation
• Reverses Eczema-tightens pores of go tract and prevents toxins and pathogens and partially digested foods from entering the bloodstream and overwhelming the blood stream. Because immune system is partially wired to the gut, omega-3 fatty acids prevent hypersensitive reactions to immune system. Which means the ahi-inflammitory and anti-allergy properties of omega-3 can heal eczema. (http://www.progressivehealth.com/a-natural-oil-to-help-your-eczema.htm)

3. Rich in DHA

• Brain development- why not take something that is non-synthetic

There are so many more benefits to FCLO but those are the top 3 reasons I have the boys taking it. 

We choose Green Pastures because of the way it is processed. Green Pasture extracts without heat and is preserved thru a slow fermentation process, keeping all the vitamins. 

Hello 35!

Well, Hello 35! I'm not quite sure where the time has gone. It seems like once you have kids, it just moves so quickly. I love the saying, "The days are long, but the years are short". So true wise person that said that.
I got a text from a friend a few nights ago sharing with me that she had a miscarriage. Ugh. It reminded me that 5 years ago today, I had my first miscarriage. And a piece of my heart broke all over again for her. But time with God's hand, does mend the breakage.
I'm meditating on how fortunate and how God's favor has been in our lives. It's not been easy, but its been a beautiful ride. 

PS I promise to update after Connors first day of school.