Saturday, August 28, 2010

1 Step Forward, 2 Steps Back

The past few nights have been filled with little sleep. Austin is very congested. However, nothing is really coming out of his nose. He literally sounds like a snorting pig. I know that’s not the nicest analogy, but it’s exactly what he sounds like. He’s been waking up numerous times during the night because he simply cannot breathe. Austin weighed 15 pounds at the Neurologist last week. However, he weighed a mere 14.6 pounds at his 6 month well child visit on Friday. So, I suppose I can take back what I said about him “doubling his weight.” :( He is actually 26 inches long. I knew he had lost some weight because his appetite has decreased dramatically due to not being able to breathe through his nose. My poor baby. We’re back on the breathing treatments and they seem to be breaking up the congestion.

Austin did not see his regular pediatrician for his 6 month well child visit because she’s on maternity leave. The doctor that’s filling in for her is very nice. However, she’s definitely not Dr. C and she doesn’t know Austin. I know it’s not her fault and she was very thorough. She said his weight has fallen off the chart a little, but she’s not “too concerned.” Hearing this from Dr. C would reassure me because she knows Austin, but this doctor doesn’t know Austin. Therefore, it’s hard for me to feel at ease.

Speaking of doctors, we saw the Kidney Doctor on Thursday. I really liked him and feel like we’re going in the right direction. Austin’s VCUG came back fine with no signs of reflux. Dr. Q (the Kidney doctor) said there’s a possibility that there’s an obstruction of the left kidney, which could be the culprit of the swelling. What’s the next step? They drew blood to measure the kidney function. The doctor also ordered a Nuclear Medicine Renal Scan with Lasix to rule out an obstruction. Unfortunately, Austin will have to be put under general anesthesia for this procedure. I’m thankful he won’t know what’s going on, but the thought of anesthesia is scary. I know children his age and even younger are put under anesthesia every day and do just fine. The procedure isn’t until September 7th and I just know I’ll be a nervous wreck!

I’m worried about my little man, but I have faith that everything will be okay. Please keep Austin in your prayers. I just want him to feel better and EAT like he normally does.

Wednesday, August 25, 2010

6 Months

It’s hard to believe that Austin was born six months ago(February 24th)! Six months ago, we were so scared. It was supposed to be a joyous time. Instead, we were faced with not knowing if our son had Down syndrome or not. All I wanted to do was take him home. I didn’t care what he had or didn’t have. I had a C-Section, so we had to stay in the hospital for 3 days. Those were 3 days of various doctors coming to talk us and nurses taking my baby to try and get enough blood from his body to analyze his chromosomes. They never were able to get a sample; we ended up having to take him to Children’s Hospital a few days after we were released.

Austin has come so far in the past 6 months. He’s 15 pounds and 25 ½ inches long…which means he’s doubled his birth weight! He’s eating all sorts of baby food and loves his banana yogurt. He doesn’t eat a lot of baby food at once, maybe a little less than half a jar at a time. He’s a finicky eater, just like his mommy. ;-) He can roll over from tummy to back and back to tummy. We’re working on sitting independently and getting into the crawling position. It’s a constant struggle because he doesn’t enjoy bearing weight on his arms. It may take a while, but I know he’ll do it when he’s ready. If I were to say it doesn’t make me a little bit sad when I see other babies his age doing these things that he struggles with, I’d be lying. It’s a reminder that he's going to struggle with certain milestones and tasks. As a parent, that’s very painful because no one want to see their child struggle. I have to remind myself what Austin HAS accomplished. He’s defied the odds in so many ways. He’s healthy and we have SO much to be thankful for. We wouldn’t change a thing. Not. One. Thing.

Birthdays are a BIG DEAL at our house!

You only turn 6 months once!

Our next goal is to “Sleep Train” Austin. Yes, my child still sleeps in our room…IN BED WITH US. (Bad Mommy, I know.) It all started when Ryan was working out of town during the week and he’s still sleeping with us at 6 months old. We have a King size bed and I don’t know how I end up on the very edge…every night!? I have to admit, it’ll be nice not to be kicked by a baby or wake up with a back ache due to sleeping on the very edge of the bed. However, I’ll miss not being able to cuddle with my sweet boy and watch him as he sleeps so peacefully. He needs to sleep in his own bed and we know this…I’ll just miss him being so close to me at night.

It looks worse than it is. Most of the icing ended up on his shirt.

Cupcakes are fun!

We’ve also come so far as a family during the past 6 months. It may seem like Down syndrome might weigh on a marriage, but it’s quite the opposite. We pull together during the struggles. We don’t take the good times for granted…and the good times outweigh the struggles, by far. Our life is so much more “normal” than anyone might think. We both want to freeze the time and hold on to these precious moments because they go by too fast.

Friday, August 20, 2010

Better News

I’ve been trying to write for days…but it seems like when I begin to write, I’m interrupted or my A.D.D gets the best of me. It doesn’t help that I’ve been stressed to the max lately, but isn’t that what makes life interesting?

I’m very happy to report that Austin’s appointment with the Pediatric Neurologist went well. The Choroid Plexus cysts apparently “don’t mean anything and aren’t harmful.” She (Dr. B) said that the cysts may or may not go away on their own. Do I fully understand these pesky cysts and what they‘re all about? No. I’m all about logic. I like to know WHY, or rather I HAVE to know why? However, I’m making an exception. I won’t stay up late and obsessively google Choroid Plexus Cysts. If they aren’t harmful and don’t mean anything, that’s enough confirmation for me. Thank you for all of your prayers.

Austin had an uncomfortable procedure done last week…a VCUG. I wasn’t strong enough to stay in the room. Thankfully, Daddy stayed with him while the uncomfortable, but not really painful procedure took place. This Thursday we will visit the Nephrology (kidney) doctor. We’re hoping to find out exactly why Austin’s left kidney is dilated.

I’ve noticed for the past month or so that Austin doesn’t use his arms. What do you mean he doesn’t use his arms? Well…when he’s in his bumbo chair with the tray, he doesn’t want to touch the toys with his hands. When I try to move his hands to the toys…he freaks out and whines. He’ll use his mouth like a dog to pick up the toys. Don’t get me wrong, he’ll reach for and grab things that he’s interested in…like my hair, his blanket, bottle, Daddy’s nose, necklace, his talking doll and the dog. He grabs toys when he’s on his back or tummy during playtime, but doesn’t possess very much interest in them during this time. As you can imagine, not using your arms can become problematic when you’re learning to crawl and sit independently. Austin gets so frustrated when he’s on his tummy…trying to crawl. He just doesn’t quite “get’ that he has to use his arms. His leg strength is phenomenal. Doctors are always impressed with his muscle tone. We love this type of feedback…but until Austin learns that his arms are there to HELP him move and sit, we can’t move forward. Luckily, therapy has given us helpful exercises and stretches. Austin despises them, but I know they’ll make his upper body stronger. Due to my concerns, they have decided to increase therapy to twice a month. Yes, I pushed for it. I know he’s not technically delayed, but I feel that’s what EARLY intervention is for! Maybe this is a sensory problem? I’m not really sure?

I took Austin swimming last week for the first time. HE LOVED IT! I was shocked because I thought for sure we’d have to ease into it. We went swimming 5 days in a row…only 20-30 minutes at a time, of course. He’s a little fish! For once, I’m thankful for the Texas (summer) weather because it really doesn’t get “cool” until the end of October…if we’re lucky! I’ll have a few more months to take him swimming.

I’ll leave you with pictures of his swimming adventures:

Tuesday, August 10, 2010

Buddy Walk 2010

I’ve had several people ask me how they can join our team for the Buddy Walk and/or make a donation. I figured this would be the easiest way, so I will just direct everyone who’s interested to this post.


You do have to register if you’re joining our team. It’s a short process, I promise.

We are so grateful for all of your support. Thank you!

Wednesday, August 4, 2010

A Bump In The Road

I’m trying to stay positive in the midst of not so good news. Austin had a renal sonogram on Monday to see if his kidneys were still dilated. He had an appointment with his Pediatric Cardiologist on Tuesday. Austin’s Cardiologist has several different locations and she happens to be in the same office as his regular Pediatrician when she’s in our area. His heart appointment went well. The hole is still there and still the same size. There’s tissue in the hole and apparently, that COULD mean it may close on its own. Austin’s Cardiologist has a way of putting me at ease and I’m so thankful for that. The hole isn’t slowing him down or affecting his development. We’re still watching it and will be back to see her again in 6 months.

We saw Austin’s nurses on our way to the echocardiogram room. They love Austin so much and it really shows. The feeling is definitely mutual because Austin loves them too! They asked me to stop at their desk before we left. They informed me that they received the results from the renal sonogram and that his right kidney is better. However, his left kidney is still dilated and getting worse. They referred us to a Pediatric Nephrology doctor for his kidney issues. His nurses said they didn’t want to bombard me with news, but I actually prefer to hear this kind of stuff in person. They were able to give me all his paperwork from the sonogram, which was helpful. I called today and made his appointment with the Nephrology doctor. This particular doctor has awesome ratings and thankfully he’s NOT at Children’s Hospital of Dallas. We just don’t have good luck with that hospital or their staff.

We still have Austin’s Neurology appointment for the cysts in his brain on the 19th and that’s worrying me, as well. I know that typical children can and do have health problems. However, it seems like I’m reminded more and more that Austin’s different. It’s not necessarily that I see Down syndrome when I look at him. Sometimes I almost forget…then I’m reminded that with all the joy that extra chromosome brings us, it also brings scary health problems. I’m thankful that they don’t seem to be slowing him down. I know we’re blessed to have him and trust me, we’re so incredibly thankful. I guess it’s just difficult when it all hits you at once. ..heart, kidneys and brain. I have to put all my trust in God because I just might lose it if we receive bad news from the Neurologist in a few weeks.

My oral surgery went well. I was very impressed with my Oral Surgeon and his team. Unfortunately, I developed a dry socket about 2 days after my surgery. I had to suffer through it for a few days because Austin had 2 important appointments that we couldn’t miss and they could only see me at a certain time. Thank God they re-packed my wound (?) today. I actually have an appetite again and I don’t constantly feel like I’m going to pass out or get sick.

I feel like this post is a downer and I don’t mean for it to be. That extra chromosome still brings us FAR more positive than negative. I’m just in a scary place right now.