It's An Emotional Ride

Austin had his 15 month check up today. Like a soldier, I layer myself in armor before every doctor appointment. This may sound strange, but it’s how I keep my emotions in check. I don’t usually have to “armor” myself for well child visits with Dr. C because these are typically the most enjoyable (if I had to pick one) doctor appointments. I usually save all the emotional armor for one of the many specialists that we see.


Austin had a MRI on Friday. We went over the results at Austin’s check up. Dr. C said there are no tumors or anything of the sort causing pressure on his eye…which is good. The bad news is that the area of his brain that controls breathing(and other things) is “small for his age.” My immediate thought was…” Is he going to stop breathing all of a sudden one day? “ Dr. C said that it could have to do with the delays that come with Trisomy 21. The paperwork states that he has a “TINY arachnoid cyst.” There’s so much neurological wording that I do not understand. It was also noted that there are LARGE choroid plexus cysts. No measurements were given, so it’s difficult to know how LARGE they are. We’ve known about the choroid plexus cysts for a while, but I didn’t know they were large.


I could feel the tears welling in my eyes and I had a mini breakdown. I can deal with low muscle tone, texture issues, reflux and all the delays. However, the thought of something being “wrong’ with my baby’s brain is more than I can handle. Of course, Dr. C was empathetic and understanding. She didn’t seem too concerned, but assured me she’d call the Neurologist. Dr. C is one in a million. She called me around 7:00 tonight and let me know that Dr. B (Austin’s Neurologist) said the part of his brain that’s a little small for his age(that controls breathing) is often standard with Trisomy 21 and the delays. However, she wants to see the actual scans (pictures) of his brain to view the cysts. Dr. C emphasized that this is good news and that Dr. B didn’t seem concerned.



I’m so thankful to God that we have a “one in a million” Pediatrician. She didn’t have to call me tonight. She could’ve waited until tomorrow morning when she arrived at the office. But that’s just how she is and we consider her an angel.

Yes, I’m still worried…but whatever happens, I know we’ll deal with it like we always do. The fact the Dr. C and Dr. B aren’t too concerned it huge relief for us.



In other news, the DFW area was hit by awful weather and tornadoes last night. Golf ball sized hail attacked many cars ( including both of ours) and even knocked out windows and windshields (thankfully we were left out of that equation.) The area I live in (Valley Ranch/Irving/ Las Colinas) was hit particularly hard with hail. My poor husband has made 2 payments on his new truck and what do you know? HAIL DAMAGE. My car has quite a few dents from the hail too. What can you do? The good news is we’re safe and both have full coverage.

We also toured The Rise School this week. It was a heart-warming experience. I’ll write more about that later though. It’s been such a stressful and trying day…and thank God it’s over.

Blessings,
K

MRI, Take 3

Austin will be having a MRI tomorrow morning. I’m hoping Children’s Medical Center will have their stuff (yes, I thought of the other not so nice word when I wrote that) together this time.

We’ve had a busy week…which is pretty much how every week is around here. But this week was especially hectic because Austin was sick. He had a high fever on Monday night and of course, it was exactly 5:00 on the dot when I took his temp. Doctor’s office was closed and I didn’t want to chance anything serious being wrong. We took Austin to the ER only to find out that other than swollen lymph nodes, everything looked well. We followed up with Dr. C the next day and it’s a good thing we did because she diagnosed Austin with Fifth Disease. It’s just a fancy name for a mild viral infection. Due to the fact that Austin ALWAYS has red cheeks, it wasn’t exactly alarming to us that his cheeks were a little more red than normal. Fifth Disease is a very common childhood illness and after the child develops the red checks and rash, he/she is no longer contagious. The rash is very mild and doesn’t seem to bother him. He’s feeling so much better, thank GOD!


Austin is kicking butt in Physical Therapy. A few weeks ago, his Physical Therapist said that she thinks he’ll be walking by the end of Summer/early Fall. This week at therapy, she changed her prediction…she thinks he’ll be walking BEFORE the end of summer. Speaking of walking…Austin will get his Sure Steps that he was fitted for last month on Monday. I cannot wait to see how much they help him!

We’ve been so blessed to have such an awesome Physical Therapist. She’s very proactive, which we love! She’s exactly what Austin needed. We also have another amazing Speech Pathologist/Oral Motor therapist. Austin loves to eat all sorts of foods for her, but when we get home…he wants nothing to do with it. He’s such a little stinker. I asked her about Speech Therapy and when we should begin. Her reply was, “RIGHT NOW.” This Mommy LOVES and ADORES proactive therapists!! ( I should really have T-shirts made with that exact statement) ECI gave me a completely different answer when I asked about Speech a few months ago. I don’t want this to turn into a “let’s bash ECI” kind of thing. I appreciate ECI, but Austin’s progress with private therapy speaks for itself. We love the place we take Austin to therapy for so much that we’re going to begin Occupational Therapy there, as well.

We had our last Mommy and Me class on Wednesday. There’s a summer break and M&M will resume again in September. I feel like I’ve grown as a person so much just by going to M&M. We(the moms) all face the same challenges…and when you have a baby or toddler with Down syndrome, there is so much “unknown” when it comes to the future. No one can really tell you how it’s going to be when they begin school. Will they do this? Will they do that? It just goes to show you that children with Down syndrome are NOT all the same. In fact, they are very unique and different individuals. I’m so glad that I’m involved with The Down Syndrome Guild of Dallas and thankful for resources like Mommy and Me. Austin and I have made some amazing friends through M&M. It’s just so nice to be around people who are going through the same things you are. Who needs therapy when you have Mommy and Me?



Austin wouldn’t leave my side for the first month of Mommy and Me. Over time, he ventured out and started to play with the other kids. On our last day of Mommy and Me this Wednesday, he made a point NOT to sit by me. He wanted to do his own thing. It’s such a good feeling to know that he’s confident enough to do that , but it also stung a little because it’s another reminder that my baby isn’t really a baby anymore.




The past month has been very trying in so many ways...full of tears and fears. I trust that God has big plans…I just wish he’d unveil them NOW! But it isn’t about “our time”…it’s all in God’s time and his timing is always perfect. Ryan getting laid off was devastating to our family financially, but some how…we’re making it work (by the grace of God.) A little less of this and that…juggling things around. It all works out…some how God makes a way. I’m thankful for that. It might be stressful, but it’s also strengthening our Faith. Austin no longer has crazy separation anxiety now that Ryan’s been home. In fact, he’s become quite the ‘daddy’s boy.’ It’s a great feeling to know that Ryan can comfort him when I’m not there. And it’s also nice that I can leave the house for longer than 30 minutes at a time. Ryan shines as a father and I’ve really been reminded of that during the past month. I’m so lucky to have married such an amazing man. He’s so patient and ‘hands on’ with Austin. I love watching them together.

We have to get up extra early for the MRI in the morning, so I’m going to bring this to an end. I hope everyone has a nice weekend.

Blessings,
K

Wordless Wednesday

The Best Mother's Day

Mother’s day is a perfect time to reflect on what it means to be a mother. Before I was a mom, I always tried to picture in my head what it would be like. I imagined things like: going to the park, going down the slide with my child, reading stories together and singing. Austin and I have done all of these things (and more) together. Motherhood is everything and more than I thought it would be.

There are also the things I never imagined. Developmental milestones are a struggle for Austin. He has to fight, tooth and nail, to accomplish them. Don’t get me wrong, I’m not complaining. These are just the facts. And sometimes facts can be a hard pill to swallow. It never crossed my mind that I’d be taking my son to therapy 4 times a week. Or that he’s seen more doctors and specialists in his first year of life than most of us will see in a lifetime. I would never want to change Austin. But as a mother, I wish I could make things a little easier for him.

I received the best Mother’s day present from Austin today. He STOOD…all on his own, for a few seconds. We were even able to capture a picture. He’s getting stronger. His balance is getting better. He might be late when it comes to meeting certain developmental milestones, but HE’S MEETING THEM. And we celebrate them and appreciate them SO MUCH MORE because he has to work twice as hard to reach them.

I'm so proud of my little man.

Thank you, sweet boy, for this beautiful Mother's day gift. I know you've probably been planning it all week and waited until today to show me. What a blessing you are. You give my heart more joy than I ever thought possible. Mommy is so proud of your accomplishments. I can't wait to chase you around the park and jump with you on the trampoline. I can't wait to see what you'll do next. You continue to amaze me on a daily basis. I love you!

Love,

Mommy

Small Steps

Yes, we are indeed still alive. I feel bad for neglecting this poor blog. My laptop decided to crash on me about 2 weeks ago. Ahh, the joys of technology. It’s difficult to access my website/blog on my iPad, so my poor blog has been lonely for a few weeks. Due to the fact that my laptop and I have been close for many years, it’s safe to say I know it well. Therefore, it was an easy task of deleting my hard drive. However, finding the time to actually do this was another story. Either way, you get the point. The laptop is now healthy…so that means it’s time for an update. I hope you’re ready for one!


Where do I even start. How about THERAPY. Private Physical Therapy has done wonders for Austin and he loves his physical therapist. The fact that he’s rocking in the gross motor area means that Mommy and Daddy are really tired at the end of the day. I don’t know what’s in his milk, but sometimes I’m tempted to take a shot of whatever he’s drinking because this kid has endless energy. In all seriousness, he’s so much fun! Even with our crazy schedule, we manage to have A LOT of fun.

Austin has started Oral Motor/Food Therapy twice a week at Our Children's House of Baylor. Again, we have another awesome therapist. We’re still doing the ECI thing too. But I take it with a grain of salt. Our previous Occupational Therapist was apparently terminated. Of course, no one called to make me aware of this…which isn’t much of a shocker, as it is an early intervention STATE program. I hate to give ECI that stereotype, but they aren't exactly professional. Austin had his yearly evaluation with ECI last week. Two people whom had never met Austin before evaluated him…because that makes sense? But I digress.

We're learning new exercises in OM Therapy to help strengthen Austin's face muscles. As I’ve stated before, children with Down syndrome often have low muscle tone, also known as: Hypotonia. This includes the muscles in the face. Therefore, they often struggle in the oral motor department. This is also another reason why speech is delayed. Speaking of low muscle tone, Austin was fitted for SURE STEPS last week. Children with low muscle tone have really flat feet and it’s hard to strengthen the muscles in that area, according to our Physical Therapist. He will probably have to wear them for a few years and of course, he’ll go through a few pair- as he’ll outgrow them. We picked a cool camouflage design…very “boyish” and cool. He will rock those sure steps like no other. I’m excited to see how much they’ll help him because I’ve heard nothing but good things about them. We’ve been working on walking in physical therapy. It’s hard work and Austin screams protests the entire time. But he doesn’t give up. He keeps going(screaming and all) and he finishes his “laps.” We’re so proud of our little man!

Pictures from Oral Motor/Food Therapy:

Pictures from Mommy and Me

Driving Daddy's truck

Blessings,

K